Saturday, August 31, 2013

This is NOT Science Fiction

We decided to stop for a cup of tea. Sadie had stayed the night at our place, wanting a sleep over too, and was getting soaking wet at a splash pad when her mother joined us. After Sadie exhausted herself and was dressed again, we went round the corner to a small restaurant we all like. To get to it I ride up a long concrete ramp and make a sharp turn. At the top of the ramp is a small patio with two tables right by the window of the cafe. Both were empty and, as there were three chairs at the table, one on either side and one by the window, we moved a chair to be on the fourth side.

We were well ensconced and deciding on drinks when the woman who runs the cafe came outside with a bottle of water and some glasses. She set them on the table and then said, "I'm afraid you can't have a fourth chair at the table like this." She paused, as if she'd said this before, often, and not gotten a welcome response. "You see these two tables are at the top of the ramp. With a chair here it narrows the space, and though someone in a wheelchair could get by, it would be cramped. We take accessibility really seriously here at my restaurant."

Now, I was sitting there, in my wheelchair, listening to her. I was in such deep shock that I found myself bereft of anything to say. Then, she brightened and said, "Maybe if we put two chairs behind and move the table over a bit, we could still keep this area free." What she suggested worked.

After we were settled, she apologized for making us all move, I'd found my words again so I spoke up and said, "I am the last person you have to apologize to for keeping a space accessible." She smiled and said, "I thought you might understand."

I have been using a wheelchair for seven years, I have been advocating for disability rights and disability access (of some kind) for most of my working life, and I've never, ever, had the experience of a shop keeper, a restaurateur, or a keeper of any public space, state, by word and action, that they were intentionally accessible. Ever.


We'd been to that cafe several times before, and as I thought about it, we went both because of the food and because of the welcoming atmosphere. They have an accessible washroom that is never blocked by chairs, never used as a storage closet, never kept for staff use only. It never occurred to me that this was all intentional - I think because the concept was foreign to me.





Who'd have thought?

Clearly not me.

Friday, August 30, 2013

A Safe Place: Camp Week Ends

Today is the last day of summer camp. Tomorrow life returns, more or less, to normal. I am surrounded by egg carton dragons (that fly, don't you know) and we've got the famous paper plate mask of Medusa and we've got a cardboard tube switch blade knife and we've got a pebble game, with its complicated rules, all made at camp, all strewn around the apartment. Every day we got the 6 year old version of history, every day we learned a little about how much a mind can be stretched in a week. It's been fun. And exhausting.

One evening, during the week, Ruby called to talk to her mom. When the answering machine kicked in Ruby left a message, "I'm having fun and don't worry, I'm safe." I glanced over at Joe when she said this and saw that those few words, well actually two of those words were powerfully affecting.

I didn't grow up in a safe world. I grew up fearing the violence and anger of on who was responsible for my care. It was a scary world, I was a frightened child. From a young age, while little girls were playing house, and little gay boys weren't allowed to, I knew I didn't want children. I was afraid of the anger I felt deep down inside. I was afraid that I might not be able to control the powerful emotions that it took all my power to suppress. I think now that I worried then that I might hurt another maybe was the formulation for much of my work, much of my career. I knew, at an early age, that care providers had power, I knew at an early age what that power did to people.

Later, after identifying as gay, it was a different kind of experience. The mythology of who gay men were wasn't mythology then, it was presented as fact, children and vulnerable people need to be protected from gay predators ... Even friends, who had children, kept them from meeting us. What harm we might do. I knew that none of this was true, but I feared kids. I feared that my touch was so contaminated that I'd be accused just for smiling at a kid. So, we grew comfortable with the unspoken decision that we wouldn't have a child.

This decision was thrown into chaos, years ago, when a woman approached me to be the biological father of her child. We discussed it endlessly. In the end we all decided that this was not the best circumstance for this to happen. But down inside I worried, worried that I would be a negative influence on any life connected to me.

It's been a joy, therefore, to, unexpectedly, have kids in our life. We're at the grandparent age, a great age for being with kids, and I find that I am delighted by the kids. I am not easily moved to anger. I do not want to misuse my power. I love watching them both assert themselves and find themselves and I am absolutely thrilled when they speak in their true, authentic voices. I like it. Joe likes it.

They aren't related to us.

But they are connected.

And sitting next to Ruby when she called and left a message, one that every parent wants to here, "I'm safe" meant so much to both Joe and I.

So Ruby, and Sadie who spent last night here, go home today. And we get to hunker down in our very quiet apartment knowing that we've got the kid stamp of approval ... this place is a safe place.

Always good to know.

Thursday, August 29, 2013

Silly, Indeed

(photo description: Six year old girl dressed up in a fancy pirate dress and hat. The dress is pink and black and has a skull and crossbow at the waist and another on the hat. She is fingerspelling 'R R'.)

It was costume day at the Royal Ontario Museum's summer camp. Joe and I discovered this, by accident, by reading through the weekly activity sheet that Ruby had been given on the first day. I don't know how we missed it the first time through. But luckily we read this Tuesday afternoon and the costume day was Wednesday. Before picking Ruby up we went in search of costumes. We found a store that had just put them on display for Halloween. Instead of just buying one, we then went and picked Ruby up and headed back to the store. Her costume, her choice. She picked two to try on. First she stepped out of the dressing room as a Vampire ... next she stepped out as the pirate. It was a hard choice for her to make, she chose, finally, the pirate.

The next morning Ruby had her picture taken several times by passersby who loved the costume and asked if they could take a photo for their children or grandchildren. I have to admit, Ruby carried the costume well. She walks with the confidence of a pirate! When we got to the ROM, we sensed a problem, very, very, very, few - in fact, almost none of the other kids wore costumes. The staff were dressed up but the kids were just in their day cloths.

One little girl was really upset. "No one else is wearing a costume!!!" Her mother tried to comfort her, but she was having none of it. "They are going to stare at me all day. They are going to make fun of me." With all the talk about bullying and teasing, you'd think this would be lessened. Hearing her, I wondered how Ruby felt. We'd put a change of clothing into her bag just in case this happened. She could easily step into a bathroom and come out dressed like it was any other day.

We asked her what she wanted to do. She listened to the other girl, all upset about being in a costume, and then said, "I like my costume, I'm going to wear it. I don't care if other kids aren't wearing one. It's OK to look different." And off she strode, in pirate mode, the heels of her cowgirl boots striking the ground with purpose. When the other little girl, who had not noticed Ruby in her costume saw her, saw her confidence, she quieted and then gave her mom a hug and headed off to her class.

When we picked Ruby up after camp we asked her if she wanted to change out of her costume because we were going to get her nails done. She only thought for a second, "No, I like my costume. I don't mind if people look at it." And they did.

Ruby is comfortable with others being different, now she's becoming comfortable with sometimes being the odd person out, comfortable with choosing difference over sameness ... it was clear that she is headed towards a kind of independence that really matters - not being ruled by the opinion or codes of others. So what if she was one of only two kids in her class with a costume? So what? She told us that some other kids had brought costumes to wear but when they got there and saw few others in costumes, decided not to put them on.

"That's just silly," she said, and shook her head.

Silly, indeed.

Wednesday, August 28, 2013

The Little Girl, The Ramp and The Decision

I have been either teased or stared at almost every day of my life. There is an unrelentingness to the experience that weighs more than I do. As such, I don't ever want to be responsible for anything of the sort happening to another. I remember a long while ago, when Ruby started school, I decided NOT to go with her because I didn't want her association with me to result in her being teased. No one else really supported my decision but it was my decision to make, and I made it.

Ruby is staying with us for the week because she is attending summer camp at the Royal Ontario Museum. On Monday morning we all went together over to the ROM but I stayed up on the sidewalk as Joe and Ruby went down to register and get settled in. I waited again at the end of the day for the two of them to come up the stairs. We went off and had additional adventures in the city before coming home to all make dinner together.

At some point in the evening Ruby said to me, "Um, Dave, did you know that there is a ramp down to where Joe drops me off. That means you can come down too." I told her that I had noticed the ramp. That seemed to satisfy her, she wanted me to know it was there, she knew I knew. That was it. The next morning we went back with her and again I stayed up on the sidewalk and watched them go down to the registration area.

As I sat there kids and parents poured by and, as predictable as the laws of gravity, eyes lingered on me, fingers pointed, questions were hushed by parents. I was glad that these kids didn't associate me with Ruby because I desperately don't want her teased because of me. Knowing me shouldn't be painful.

This afternoon we went to pick her up and we got there a bit early. I'd been thinking about our conversation and realised that Ruby was asking me to come down to the reception area. She is a bright girl, she knew what she was asking, she knew what it meant. She knew the risk. She asked anyways. Last time it was my decision, this time it was hers.

I found the ramp and made my way down. There is a little alcove where I could tuck myself away, and I did, for no other reason than I wanted to surprise Ruby by being there. She loves to hide, she loves to seek ... I smiled while waiting for them to come. It took a while for her class to be let out, they ran a few minutes over, so at one point I peeked out to see if I could see them. I saw Joe wave towards the hallway, I knew he'd seen her, they'd soon be coming my way.

I pulled back, out of sight of where Ruby gets her stuff. Kids and parents strolled by. A small group of kids gathered as a group and stared at me, saying things in whispers and laughing. This lasted only seconds before a security guard was over and stepped in front of their view. I don't know what she said but they dispersed quickly, all looking sheepish.

Moments later Ruby came into view, she saw me, burst into a grin and ran towards me. She was travelling at high speed when she leapt onto my footrest and launched herself up into my arms for a big hug. Then she popped down, backed up and took another run at me. After three huge hugs we were on our way. The security guard, back at her post, smiled broadly and, I noticed, wiped a tear from her eye.

At the top of the stairs Ruby announced that she was tired and wanted a ride on my wheelchair, she jumped up and we were on our way. Because I'm me, I wanted to talk to Ruby about what happened but, also because I'm me, I thought about it long enough to understand to leave well enough alone.

I'm about to go to bed, tired from the day and the activity. I can still feel the impact of those flying hugs around my neck. It was one part affection and two parts declaration: Dave, mine.

Tuesday, August 27, 2013


Two days ago I wrote a blog post The Parade about buying flowers for our second bedroom. When I wrote the last line:

And I rode beneath them (the flowers), hearing their confident shouts. And in my heart, I joined them. "Look, look, and see ... aren't we beautiful."

I thought long and hard about pushing the 'publish' button. I wanted to absolutely, perfectly sure that I was being authentic and saying exactly what I wanted to say. I knew that what I was saying would be seen as almost outrageous by some and completely unbelievable by others. I braced myself for how people might have responded. I will admit that that particular blog is one of my favourite pieces of writing, one that I, personally, will read many times over the next few years - I was almost frightened to let others see it.

As I predicted I did get a negative comment. Some wrote and asked me why I put it on the blog. Since I moderate my comments (for spam, not for any other reason) some thought I simply shouldn't have published it. But I didn't even slightly hesitate to allow the comment through. The comment may be shocking and ugly to some, but it's pretty much a common thread in my dealing with others. Any fat person will tell you the same. Unspeakable cruelty, unfortunately isn't silent. Here's the comment:

This is a great story except for the end. You aren't beautiful. You are fat. Maybe if you admitted that you might be motivated to lose some weight. I saw you lecture once and you are very talented but I was too distracted by your weight to learn anything.

What saddens me about this is the way that people have a paucity of understanding of what 'beauty' is ... equally, it saddens me that beauty has been made shallow, cosmetic, skin deep. To live in a world where beauty is experienced only on billboards and advertisements seems tragic.

I have experienced beauty ...

reading a book wherein I am caught, suddenly, by the astounding beauty of words ...

listening to a lecture wherein I am struck, suddenly, by the astonishing beauty of an idea ...

watching a crowd of people and seeing Joe's particular walk and I am struck, suddenly, by the amazing beauty of the man I love ...

I experience beauty, lots and lots and lots of kinds of beauty.

I imagined myself, with flowers towering above me, beautiful. A fat old man in a wheelchair carrying a bunch of fabric blossoms to decorate the room for two little girls - strikes me as a beautiful sight. I know so because I've seen it - Grandparents doing silly walks to make a child laugh - parents wearing silly costumes to join in a child's fun - big sisters patiently letting little sisters win races. That's beauty.

And that's what I thought about when I wrote how I felt. I was proud of myself for doing something that I knew would draw more attention to myself, believe me I get enough for just being, just because I really wanted Ruby and Sadie to experience a moment of joy.

And they did.

They loved the flowers.

And because I was honest about how I felt, someone else was honest back. And because I made my heart visible, someone saw it as a target. I know that whoever wrote that knew that it was hurtful, and they chose to do it anyways.

I'd rather live in my world, where beauty is a word with multiple meanings, where beauty is more often experienced than seen.

Monday, August 26, 2013

The Big Ship Cuts Through: A Discussion Topic

It was wildly crowded. I'd asked a police officer to let me pass by the barricade because there was no other accessible entrance to the busker festival. We were all together celebrating Mike's birthday and were looking for a place to grab some street food. About a half block down I came to a halt because a performer was just beginning her set. The ring around her was three deep and allowed no possible, or so I thought, passageway through.

Everyone else was able to hop up onto the sidewalk and walk behind the crowd. I could not. I sat there trying to figure out something to do, other than to simply wait for her performance to be over. Then beside me a woman in a manual chair, along with a friend behind her, helping her navigate the crowd, came to a stop. She looked at me in frustration. She wanted to pass by too. I leaned over and said to her, "Follow me, I'll cut a path, stay right behind me." She smiled and said, "Your power chair is going to be the ice breaker, huh?" I nodded.


The Louis St.-Laurent had nothing on me. People moved aside, unwillingly at first, annoyed at the bother, but when they saw me, and the woman behind me, with determined looks on our faces, they moved. I don't know how many thought we were simply pushy over-entitled people with disabilities and how many realized that there was no accessible option for us to pass, and, I don't care. We were polite, I always asked kindly. By the time we crossed in front of the performer, who was gracious, the other side of the crowd parted magically and we were through.

The woman thanked me. And I thanked her.

Had she not come along I don't know if I would have set to getting through with such determination.

Such is the fact that it is easier, way easier, to advocate for another than it is to advocate for oneself. I felt like I was doing this to get her through, the fact that I got through too was a side benefit of what I was doing. But that's true of advocacy for another too ... isn't it. A battle won is a battle won, for everyone.

I wonder.

Do you all experience the same thing - do you have an easier time speaking up or speaking out on behalf of another than you do for yourself?? I'm curious if this is a universal phenomenon. Tell me in the comments.

Sunday, August 25, 2013

The Parade

I'd seen them weeks before, and remembered them, suddenly, while going past. They had been out on display when we'd first seen them, but the store had just opened and nothing had yet been moved out into the street. The entrance was flat so, even though I saw that the interior of the store was stuffed with every imaginable thing, I headed in. When I'd first seen the flowers they were in a big box and there were dozens and dozens of them, now there was only four or five stalks. I couldn't get down to where they were, so Joe went down and picked out three different stalks. He brought them to me with a look of concern on his face.

"How are we going to get these home?"

"I'll carry them," I said cheerfully.

"But we've got lots to do before we get home."

"Yeah, that's cool, I'll carry them, not to worry."

"But ..." and I saw real concern on Joe's face.

"Listen, Joe," I said, "I know that people will stare at me carrying these, but they will stare at me anyway, might as well give them a reason to look."

So we bought the flowers. As you can see in the picture, they aren't real flowers at all. What they are are long stalks of brown wrapped wire with fabric flowers attached to them. There are red and pink and purple and white flowers. Together they made an impressive, and very tall, group. The stalks are between four and five feet tall.

After leaving the store, I carried them defiantly into the street. I looked like a float. I was a one man parade. A disabled laddie liberty. I wanted them because when I first saw them, I thought they'd look good in our other bedroom. The one the girls use when they come to stay. I thought it would pretty up the room. The flowers managed to have both girls favourite colours mixed in, so they'd know that we had thought of both their preferences in picking the stalks out. And, of course, I liked them.

Now they are up and in place. They have a story of their own to tell, of the trip they made, from the store, where they languished waiting for a home, to the pride of place in the bedroom. And I have my story too.

A story of buying something that I knew was going to either increase or intensify the notice I got while travelling up and down the street, into coffee shops and out of stores. We did everything that we needed to do, me carrying these tall flowers along with me. I felt good when I got home.

I imagine that the girls will love this addition to what they see as their room. They haven't seen them yet but they will today, and I can't wait for their reaction. I wanted the flowers because I wanted to do something to surprise and delight two little kids that I adore. And that fact gave me all the courage I needed.

"Stare at me all you will," I thought as I left the store and we headed on our way, "I won't be cowed by your notice, your stare or your curiosity. I LIVE here, this is MY community, and I will BE here and DO here what ever I so CHOOSE."

I did get stared at more that I would have otherwise. The flowers, bright in the sun, tall in the shade, were excited to be liberated from a dusty cardboard box at the back of a store, so they called out - "Look, look, look, aren't we beautiful."

And I rode beneath them, hearing their confident shouts. And in my heart, I joined them. "Look, look, and see ... aren't we beautiful."

Saturday, August 24, 2013

Tattoos and Amazing Grace

We got on an elevator that went up, not down. We arrived at a floor where people were leaving various court rooms, hopping on the elevator heading down to the lobby and from there to the street. We had wanted to go down to where there's shopping and a food court. A young man got on the elevator. One arm was completely covered in tattoos, the other had none. He wore a white tee and a scowl. It didn't look like he was having a good day.

The other fellow who got on was a fellow in a business suit and a briefcase that said, "I work for a lawyer." Some briefcases are more uppity than others. The door closed. The young man was standing beside me, the lawyer on the other side of Joe. There was some tension in the air. The young man spoke, shortly after the door opened, he spoke to the lawyer. His voice travelled over my head, the words making breeze as they travelled so quickly.

"Don't disrespect this guy, that's the trouble with you people. You are full of disrespect and then you're surprised when you get disrespect back."

I had no idea what the lawyer had done, Joe told me later that he'd looked at me, then shook his head in disapproval. I saw none of this, I was busy helping the elevator by ensuring that it travelled the numbers in sequence.

The air was brittle.

The fellow in the suit said nothing.

I looked up at the guy with the tats and I could see that his eyes were watery and his mouth slightly quivering. We are, none of us, very far away from the little boys and little girls that we once were. We are never far away from the schoolyard and the hierarchies first formed there. None of us.

The lawyer fellow got off first, the younger man second, it was done as if it was the natural order of things. He'd spoken up to the suit but he waited, in deference, for second place. When he got off he said, "I hope I didn't embarrass you. I just didn't like how he dismissed you." Joe grabbed the elevator door, which was closing, to give me a moment. I said, "It's nice to have someone else fight my battle for me every now and then."

He smiled and said, "I know, that's what I could use right now myself."

There was a gentleness in his voice that told me he meant what he said. He seemed lost and alone in the world. Defenceless and undefended.

It strikes me that sometimes I find myself going on and on and on about issues regarding disability. And I will continue because that is what I do. But I need to remember, always remember, that there is something about the human condition, something about how hard life is for everyone, that allows connection to be made.

Allows two strangers, both who live in the same city but in different worlds, to have a moment of connection.

I felt a little different after that interchange. As if I'd been somehow strengthened by it. I sit here, alone in the dark morning writing this, hoping that he too ... wherever he is ... feels strengthened too.

Friday, August 23, 2013

Me And My Mouth

He was waiting in line before she got behind him. This fact needs to stay in your mind as you read this little story. He had a few grocery items in a small bag held in his left hand. His right arm was used to steady himself, with an arm brace, as he stood. I headed towards the same line not because it was short, though it was, but because it was the accessible check out and I need the space to get through. A woman, about my age, was headed towards the same spot. She got there first.

She noticed his brace and her eyes went from brace to face, brace to face, as if she was trying to figure out how to understand how a young handsome man came to be using an assistive device. As the fellow in front of the fellow was finishing gathering his bags, the gentleman with the crutch moved forward. The woman tapped him on the shoulder and said, "I'll let you go first."


Really, um?

He already was in front of her.

His gaze was steely. He swung his eyes to her. I tensed up. I could guess what he was feeling. Forced into gratitude for a gift that wasn't given.


She looked to him as if waiting to be thanked.

He took a breath.

I waited.

What was he going to do or say?

What would I do or say?

What would you do or say?

He turned from her, took the items out of his bag and finished placing them on the belt. He said nothing. Unfortunately she wanted something from him, "Really," she said, "I don't mind you going ahead." She moved closer as if to make it look like she had let him pass to get to the space.

I saw his shoulders tense and I COULDN'T TAKE THE PRESSURE.

I said, "He was here first, you aren't letting him go ahead. He. Was. Here. First. He doesn't need to thank you."

There was a tense moment. I saw the clerk, someone we have been served by many times before give me a little wink - like she was glad I'd spoken up.

His eyes swung to me, now I felt horrible for butting in, apology leapt to my lips. Instead he said, "I will thank you, I would have said something I regretted later."

The woman stood, mortified, between us.

Sandwiched in, surrounded by disability, she just said, "Sorry, I don't know what made me do that."

He said, "No harm done."

I nodded even though I didn't agree.

Thursday, August 22, 2013


The front table, the one right by the window, was free. I like this table as it looks directly out onto a very busy street and an equally busy sidewalk. It makes for perfect people watching, something both Joe and I enjoy. Joe removed a chair, I slid into place and we were in. We'd picked up a couple cups of tea from David's Tea for me and Joe hiked up to the bar to grab a beer. It was late afternoon about an hour or so from the after work rush.

Only a couple sips into my tea, and before Joe got back from the bar, a fellow we've known for a number of years came into the bar, said hello, asked to join us, and grabbed a seat. He's easy to chat with, an extremely pleasant fellow. We settled in to talk about nothing, with passion, and we were all enjoying the afternoon, the cool of the bar and the pleasure of unexpected company.

Into the bar came a woman, incredibly unsteady on her feet. She saw the fellow at our table, greeted him, and plopped her purse down on the chair beside me. In a second she was  sitting across from me. She had very angular movements which happened at unexpected moments. Her speech was difficult to follow, it was as if her meaning came in puzzles - here are the words, make a sentence - but for all that she was charming and pleasant.

I could see our friend tense up from the moment she sat at the table. He seemed relieved that Joe and I fell into conversation with her, naturally, without much fuss. I thought his relief was because he was worried that we might be either unwelcoming or, maybe even, cruel to his friend. I finally realized that I did better in hearing the woman if I looked out onto the streetscape when she was speaking, this way I could concentrate on the words without being distracted by the movements, which became bigger and more pronounced when she spoke.

After a bit she pulled a package of cigarettes out of her purse and said that she was going outside for a cigarette. She asked me if I'd watch her purse, I said yes, and she went to the door, looking as if she'd fall at ever step - she didn't. Once out the door we were all silent for a second and then our companion apologized for her and for her intrusion into our conversation at the table. It was clear that he was a wee bit embarrassed by her. Her angular, unexpected movements and her unique approach to speech and her assumption, perhaps hope, of welcome were, obviously, a bit too much for him and he was worried that we might have been annoyed.

Both Joe and I said, genuinely, that the reason we come down to the pub for a beer was to run into and chat with people - and that's all that had happened. Then his movements changed, he became more and more uncomfortable and his movements showed his embarrassment. He started to say things that were meant to put the apology aside, wishing he hadn't betrayed his friendship with her by apologizing to us, hoping that the apology he made didn't diminish him in our eyes. In a word, it was all awkward.

She came back, downed a big shot of Sambuca and took a sip of cola, hauled up her purse, said her goodbyes and 'nice to meet yous' and was gone. Our conversation moved on. Then suddenly he said, "she's a really nice person, wouldn't hurt a fly, best heart you could imagine, but she assumes a welcome she rarely gets, I apologized because most of the time when she just joins like that people get pissed off, she takes some getting used to ..." I stopped him, and said, "I get it." He said, "I thought you'd understand." I said, "No, I get it. I get the same thing, people assuming I'm way different because I'm way different, I get it. We're good."


"Just promise me something," I said and he nodded, "don't apologize for her again, and, please, don't apologize for knowing me either."

"I would never ..." he said.

"Good," I interrupted, "keep it that way."

We all laughed but I meant it and he knew it.

Wednesday, August 21, 2013

The Letter

The letter was horrific and hateful ... it violently suggested the end of a life, the harvesting of organs ... the final solution to the problem of difference in the neighbourhood. People are reacting with shock. Outrage even.

For the last several years I've been reading about the increased hostility towards people with disabilities in Canada, the UK and the US. Images of several people with disabilities, killed by gangs, killed by neglect, killed by families come to mind. Reading of studies that show the people with intellectual disabilities who live in the community live in fear, knowing from personal experience that people easily demote me from a person with rights to 'thing in the way, hearing from others with disabilities horror stories about life out in public.

Hate crimes against people with disabilities are on the rise.

We knew that, first from statistics, then from personal experience.

I'm supposed to be heartened because so many people have rallied around this child and this family. I don't. I have lost trust. I believe that people are upset at the clear expression of disphobic and ablest attitudes - in the same way that people are horrified when people use racist words and express violent racists sentiments, but go about practising a quiet racism on a daily basis.

Those who decry the words of the letter - after you get over being all righteous about the words used, will you be fighting for employment rights for people with disabilities? The writer says that this young man will never be employed, well, shock, people with disabilities are disproportionately unemployed - where are the adaptive workplaces, where are the supports for people who need them to work, where is the consumer demand for seeing diversity in the workforce in stores, restaurants, government offices?

Those who are horrified about 'normal girls' not dating him. Where are you in ensuring that integration and inclusion happen such that people with disabilities have real opportunities for developing friendships and relationships with people regardless of disability status? Where are parents demanding that there be more kids with disabilities in the classroom so that their child comes to understand diversity in a real way while young?

The person who wrote the letter did a favour for the bigots ... "I'm not so bad as that?" "I'd never say those things out loud." "I guess I'm pro-disabled because I think killing them is going a bit far."

What the letter writer has done is alert us all, in the disability community, to the depths of hatred that exists towards those of us with disabilities. It should be an alarm bell sounding ... this is what's already here, imagine what's coming.

To that mother and to that child - I'm sorry you had to experience that, I'm sorry that those words were ever said to you, I hope that behind all the tinsel of media hype and the 'outrage' of others ... you know that there is a core of support behind you. Not temporary, not fleeting ... the disability community is here, we know what you are facing, we know what you are fighting for ... I guess I'm saying, though you may feel it, you are not alone.

Tuesday, August 20, 2013

A Line Has Been Crossed

I was pushing through the doors, I do this often, I'm fairly quick about it. I was just reaching down to give the final shove out when I heard the heels of shoes clicking to floor behind me. I am rolling through when I am shocked by being slapped on the back of my head, a voice saying angrily, "get out of my way I'm in a hurry," and then a little shove pushed me faster than I wanted to go. I turned to see the back of a woman, who looked young, walking quickly away, texting furiously on her phone. I never saw her  face.

I have been shoved before. The first time it happened I was waiting for Joe outside a movie theatre. I was off to the side. A fellow and his girlfriend came out, he grabbed the handles on the back of the wheelchair shoved me almost violently saying, "You people are always in the way."

I have been barricaded before. The first time was down in the States where a woman stopped right in front of me, her husband behind. I couldn't move. She wanted to heal me. She and her husband wanted to lay hands on me an pray. They were very insistent, so was I. They left when some staff from the store came to assist me.

I have been steered somewhere against my will. The first time it happened I was at a poster session at a conference and a young fellow came over and told me that his teacher wanted me to see their poster, that it would interest me. I said that I would get there but I was going up and down the rows in an organized fashion because I wanted to see them all.  This wasn't the answer he wanted so he just grabbed the handles and started to move me in that direction. I held on to my wheels in protest. I won. AND I skipped the table. I was too afraid to stop.

But ...

I'd never been struck before.

The hit did not physically hurt.

What hurt was the ease with which she did it. No consideration for the fact that she was striking a fellow human being. No thought about what her action might mean to me because hitting me, non-human me-meant nothing to her.

I was hit.


Without apology is bad enough.

Without notice is terrifying.

Monday, August 19, 2013

Count Them One By One

(post expresses Christian sentiment)

Whenever Joe and I leave home we each make sure that we've got some spare change with us. We want to be prepared so that when someone asks us for change, we've got it. There is a man that we'd never given money to, but whom we see often. He is almost exactly in the middle of our walk between home and grocery store. Going down, we're out of change by the time we get to him, coming home the same is true. I always nod to him and kick myself for not remembering to save something for him.

Over the weeks he's been there, always in the same spot, his presence has grown. He sits, impossibly thin, shirt off, with a bushy white beard. His white hair is pulled back into a long pony tail. Typically his sandals are off and sitting neatly together beside him. He places a cup out to catch any change offered, but other than that never asks.

What I've really noticed about him is that whenever he does have something, he shares it. I've often seen him give half a sandwich to any one of a number of street youth who huddle beside him as if he is their protector from a world that both knocks them down and keeps them down. When they aren't there, he shares bits of bread with a few of the birds that seem to be round him, waiting, like he does, for the gift of food.

His clothes always seem to be clean, his hair washed, his face shining. He looks like an old hippy on some days, a modern saint on others. There is nothing but gentleness about him. One day, when going by, I saw a woman, in a business suit, sitting on her haunches beside him, her back leaning on the wall. She was talking quietly and crying, he was listening intently and crying with her. I don't know what she shared with him, but he felt with her.

The other day we'd finished our shopping and I remembered to keep some change in my pocket to give to him. I figured that, over time, he'd given lesson after lesson to me. It was time to give back. I approached him, change in hand, and stopped in front of him. The cup was too low for me to reach, I didn't want to throw the money down, or toss it to him, so I said, "the cup is out of my reach." He smiled and said, "let me fix that," and lifted it up to me. I put my change and heard it echo in the empty cup.

He put it down saying, "bless you for this gift," he said it as if he was really offering me a blessing, but he continued, "not just for the coin, but for your notice, it's nice to hear a friendly voice." My eyes filled and I thanked him and I rushed on my way. I felt his blessing on me all day.

I felt that I had been well and truly blessed.

His story is unknown to me. It doesn't matter. His presence, his warmth, his charity are all I need to know.

And I know enough.

Just enough.

To be humbled in the presence of blessing.

Sunday, August 18, 2013

Dogs and Difference

Breakfast! Throughout the 44 years of our relationship, Joe and I have loved going out for breakfast. We very seldom go out for lunch or dinner, except when we are on the road of course, because we like our own cooking and enjoy making meals together. But breakfast - that's a meal that begs to be put in front of you by someone else. After living here for five years we discovered a wonderful neighbourhood breakfast spot.

The problem with seeing it was that we'd always seen it. We'd driven by it every time we'd been to the city for over 30 years. But then one day, a day out wandering, I actually saw the place. Saw that the patio was accessible, saw that breakfast was being served, saw that it was two blocks from where we lived ... and seeing made the idea of going possible. Ever pick up something in your house and say, "I didn't realize we had this." Well that's what happens when you have but don't see.

I have to gird myself before going somewhere new. I noticed that this was a spot for locals the moment I looked at the people packed around the tables on the patio. They chatted with each other hollering from one table to another. Anyone new coming in would be scrutinised. My size and my chair draw attention in predictable ways, stares and silence. Yep, I can quieten up an area just by entering it. I think I've discovered that for the eyes to fly open the mouth has to slam shut - there's got to be a science behind that.

As I expected, when we went through the little gate and onto the patio, we did so in silence. The sound of the chair scraping on the ground echoed in a space suddenly empty of everything but me. I know, and can almost time it to the exact moment, that seconds later conversations would resume. First in whisper - "Do you see the size of him?" - then as they bore of that, back to chat and gossip. Both Joe and I know, and have reckoned with the fact, that it will take six or seven times before we go from 'look at that' to 'locals' ... it's a transition we've done millions of times before.

But this time, it only took the once.

The patio is popular for a couple of reasons: it's outside and you can bring your dogs with you. Clearly by the number of pooches there, many come for breakfast or coffee as part of a ritual on their morning walks. Dogs aren't shy of saying hello. Over the course of breakfast little faces looked up at us with curiosity, never laced with hostility. To a one, because I love dogs, I said hello to each pooch and Joe and I petted each dog, while being brought into conversation with the owner. We learned the dog's name, heard a joke about the dog's temperament, and got permission to pet.

That little bit of contact,that tiny moment offered that allowed me to demonstrate that difference doesn't mean different sped the process of introduction up to light speed.

The next morning we went there, maybe two days later, as we approached I heard chairs moving aside, a pathway being cleared, as they made the way to an empty table open for me. The dogs all perked up remembering that we were friendly and a bit easy with pieces of toast. We were greeted, and that was that, we were locals.

Dogs can be the alchemy that turns hostility to hello.

Magic indeed.

Saturday, August 17, 2013

Right is Right

(photo description: Ruby, a six year old girl wearing a pink stop with stars, being carried by Dave, a sixty year old man in a brown shirt wearing a gray hat, while steering his power chair.)

When we went into the theatre I didn't like the disabled seating spaces. They were way, way too close to the screen. I had everyone climb up a few stairs to the first row on that section, I then parked my chair beside the stairs, I was with the group, only slightly separate. The girls had their popcorn and their drinks and were busily eating while Mike, Marissa, Joe and I were chatting waiting for the show, Percy Jackson: Sea of Monsters, to start. We like these outings, it's fun to all be together.

The movie began and I tensed up at part of the story line. A young teen, a cyclops, sprays himself with a magical spray so that when they go into the city, no one will be able to see his difference. Suddenly the boy's face becomes two eyed handsome. He looks at himself with curiosity and wants to know, from the others, how he looks. He is, then, of course, accepted by those in the community. I didn't like this - though I knew that what he said was true. He told of being in the wood and spotted by campers who reacted to him with horror and fear. He was tired of being treated as a dangerous monster. The new look saved him from all that.

I don't want Ruby and Sadie to equate difference with deviance and danger. They don't now but as they get older messages like the one on the screen will creep more and more into their awareness. These kids are remarkable around difference, they don't stare at people who are different, they don't seem to do much more than notice and sometimes ask a question. That's it. What was this movie saying to them? All of this was going on in my head, interrupting the story for me. I pushed it aside and moved on.

As the movie played Ruby left her seat and came up to sit on the barrier between where they were and where I was. It was like a big fence with a top rail and a middle rail. She sat on the middle rail, her feet dangling. Now she was virtually beside me and I was able to watch her watch the film. She was right into it, enjoying it.

Then, wham, the magic mist wears off. The young teen's face returns to his normal, two eyes became one. Ruby said to herself, with relief, "Finally he looks right again." She watched as he took the bottle of magic spray out to spray himself again and she whispered under her breath, "don't." The bottle was empty, the movie continued with him being a cyclops throughout.

I am often proud of who these girls are becoming, proud of knowing them, proud of seeing them grow into caring girls who accept diversity simply because it 'seems right'.

I was talking to Mike about this and he said that he had heard Ruby say what she said and whispered to Marissa, "Dave will like that!"

And I did.

She knew that right was who he was, not who others thought he should be.

When she's right, she's right.

Cyclops Pride at the AMC!!

Friday, August 16, 2013

It's That Simple

I met a woman with an intellectual disability in a card shop yesterday. She was full of news. She was moving to a new place, getting a new job and making new friends. Her excitement couldn't be contained, it spilled out of her, filling the air around her. As I caught up with her news, I was caught up by her enthusiasm. I had known that she'd set this goal, I had known that she was working on it for a long while. It had been chance that we met like this and I was thrilled that it happened. She's moving out of town and I don't think I'll run into her, maybe ever, again.

She explained to me about how it came about and how much she was looking forward to it and how she was expecting her life to change. I leaned back in my wheelchair, content to simply listen to someone sharing glimpse of a future that had been longed for, a future that she was never sure would happen. And now it has.

As the adrenalin wore off she slowed down a bit and spoke, briefly, about the journey there. She'd had some hard times. She'd made some poor choices. She'd worked so hard. But she shook herself out of all that, though it was all true, it was also true that it was past. She was moving on. The next chapter of her life awaited her.

I sat back enjoying:

being the passive participant in a conversation with a person with an intellectual disability

listening to someone talk about life changes, life struggles and life accomplishments.

Believe me, when I started in this work, none of this would happen. People with disabilities did not drive conversations, they did not steer their lives towards goals that they set independent of a team, they did not map out their own destinies. When I started it was very different. If you hadn't seen someone with a disability for a couple of years, and if you then asked 'what's new' the answer would have been 'nothing.' Because nothing did happen. Oh, reports got written, progress happened on paper, progress happened on goals that didn't matter, progress happened for the approval of, and under guidance by, a team.

So, I sat listening to her, glad that she wanted to convey the news to me. Glad that she was excited. Glad that someone, somewhere, did what they were paid to do ... listen and serve.

It's really that simple isn't it?


Listen and serve.

Thursday, August 15, 2013

Who Am I Becoming??

I am very disturbed by my behaviour. I am concerned about how I reacted. I am worried that maybe I am changing. I don't ever want to become bitter, I don't want to be one of those constantly angry people who are pleased at the plight of others. Here's my confessional ...

We were going south on Yonge Street, just up ahead was a popular store. Unlike other stores in the area it has ribs. I don't know how else to describe it. The windows and the walls where they are located are recessed, and then it juts out sharply about a foot for about a foot and then indents again for another window. The 'ribs' are brightly painted and easy to see.

A man, walking with his wife, noticed me as I came along behind them. The stare began there. I had slowed, to let someone pass, so he had to turn a bit more to keep his eyes glued to the sight of me. I saw it coming. Clearly saw it coming. He'd wandered over and was only a couple feet from running smack into the brick wall. In my heart I knew that I should indicate to him that he was going to hit the wall. I knew I had time. I knew he was walking at a speed that would end up in some pain when he hit it.

His eyes bore into my soul.

Yet he would never see the turmoil there.

The time ticked on, seemingly slowed.

I moved my hand to indicate 'watch out' ... his eyes roamed over the size of me.

My hand fell back.

He crashed into the wall.

His wife, startled by what happened, she'd been talking on the phone and didn't notice him wandering over, blew up at him. Why was he never paying attention? Why did he constantly embarrass her? She just lit into him.

I rolled by, looked at him, and smiled.


Through the whole thing I was disturbed by what I was doing. But that disturbance, this time, wasn't enough to prod me to do the right thing. I just couldn't. I told myself that his safety wasn't my responsibility - what a horrible idea.

I admit it felt good, having the stare end with some kind of punishment. Yes it felt good but only for a few seconds.

That enjoyment was short lived.

It's replaced by worry.

I don't want to be the kind of person that just lets an accident happen.

Am I at the edge of the slippery slope? Am I just done with being stared at and objectified? I don't know. But this public post is my way of saying to you, and to myself, that it's my job, as a human being, to stay, constantly humane.

His behaviour did not excuse mine.

I know it doesn't work that way.

Now I have to work at remembering that fact.

Wednesday, August 14, 2013


On our way home from the Art Gallery of Ontario, where we poured images and ideas into our minds through our eyes, we decided to stop at the big Canadian Tire store a few blocks away. We needed to get a bicycle pump so that we could fill the tires of the power chair, when necessary, without having to go to the garage. We found the bike pumps and were immediately stumped. The clerk, a young guy who seemed to be relieved to be talking about something other than bikes, came along and we explained we didn't want to buy without trying and the way they were all packaged we couldn't.

He zipped out a knife, opened a package, and was down on his knees beside my chair, chatting about how poorly designed the wheel was in the placement of the valves. He couldn't get the pump to grip the valve, but he wasn't deterred. We went and looked at every kind of pump and none of them would work. He recommended that we check and electric version down on aisle 60. We headed off to see what was there.

We found a bunch of them, in a wide range of prices, but all of them operated out of a cigarette lighter thingy in the car. I wondered if they had a thingy that you could plug the thingy into that would then plug into the wall. We took this question to two other young men working over in automobile supplies. They listened carefully to my description of the thingy into the thingy into the wall thing. I explained that I wanted to be able to have my tires inflated at home rather than the garage.

They found me a thingy for the thingy for the thingy to go into. "This should work," the taller of the two said, handing it to me. "You want me to explain how it works?" The picture showed a thingy receptacle at one end of the cord and a plug at the other end, I said I was good. We headed off to purchase the items.

We left the store with what we needed.


We left the store pretty impressed. I was there talking about my wheelchair with three different people, talking about how to make it such that care for the chair was a little easier, and it was just a normal, typical, interaction. I could have been talking about a bike or a car or any other means of getting around. It never got weird. We all know how easily that happens. It never got uncomfortable. We all know how disability stuff freaks some folks out. The whole time it was just about pumps and about 'adaptors' (that's what they called it, a wonderfully useful term).

I guess I'm glad that they had adaptors for the pump but they didn't need adaptation to serve me. I was just a guy with a wheel that needed pumps and they were just people who sold pumps.

I don't get 'ordinary' very often.

It's nice.

Tuesday, August 13, 2013

Pills, Privacy and Me

I was chatting, yesterday, with someone who almost literally bumped into me. I had come to a stop, she was texting on the phone and walking quickly towards me, I called out but she couldn't hear me because she had ear phones stopping all natural sound. She looked up at the last minute, veered to the side, and laughed. "I've read on your blog how much you hate when people aren't paying attention." I smiled, trying to be civil because she's right, it really annoys me.

She then launched into a friendly conversation with me. Her job with a local service provider is rewarding but frustrating, her 'clients' are teaching her more than she teaches them ... and the like. It was in college that she'd started reading by blogs and one of her teachers had required the whole class to read a particular blog and come to class prepared to debate for or against my position.

After a few minutes she said that I was quieter than she expected me to be. I had thawed out during her chat, she was quite charming. I told her that I'd not been feeling well and that I'm taking a whack of anti-biotics and they always leave me feeling quite nauseous.

I expected, I don't know, something along the 'hope you feel better soon' vein.

What I got was quite different.

She said that she was a faithful reader of my blog and she hadn't read anything about me being under the weather. I told her that I don't write about every aspect of my life, only the ones that really fit with the theme of the blog AND of course the ones I wish to keep private, I keep private. To me there was no 'story' in being unwell.

I could tell she wasn't buying what I was saying. She nodded, a little curtly, and moved on. She clearly was angered that this bit of medical information wasn't up on display on my blog.

At first I thought that this was about how she, and often others, see this blog. It is a personal blog, true, but it's also a blog with an agenda. I write this blog to say things about my experience or the experiences of others in living with disability. To me this is an endlessly fascinating topic.

Then I thought  that maybe something else is going on here. I thought of all the intrusive questions I get, from strangers, about my disability, my weight, my health - information that people feel that I somehow owe them. Like I am under obligation to explain to them intimate details of my body and my health simply because they have a right to know and I have the duty of explanation. I am, of course, always clear, in my response about boundaries.

Yes, I am on anti-biotics right now. No, it has nothing to do with my disability. Last time I looked, the line up at the pharmacy was full of walking people. I know two people, right now, normals, who are also on anti-biotics. Not everything I experience is directly related to my disability.

I got sick. I'm getting better. Wow, that's a bit of a dull story.

Privacy, and the right to privacy, is still, obviously, a struggle for people to understand when the person claiming the right has a disability. The public nature of our disability does not mean that we are required to be public about the nature of our lives.

I remember, a few years ago, when having tea with friends, a woman sitting down at a table beside us. She broke into our conversation to ask me why I used a wheelchair, what my diagnosis was. I told her that this was private information. She said, "That's OK, I'm a nurse." My friends were shocked at the woman's question and the fact that she felt free to enter into a conversation, between friends, to ask a question that was none of her business. They were also surprised at how offended she was, how she presented herself as a victim of my mood, because I, politely, told her that it was none of her concern.

I was shocked at their shock.

It happens fairly regularly.

So now you all know that I've been sick these last few days. You'll see me out and about because I get bored sitting around. The pills make me nauseous but a friend recommended Kefir as a drink that might help with the 'watery mouth' and the churning guts ... and it really does.

To the woman I met yesterday: NOW there IS a story.

Monday, August 12, 2013

Reaching Back

He always sits alone. He is impossibly old. Occasionally, from nowhere, a bark of laughter will erupt and startle everyone in the bar. No one knows what he finds funny. Though he walks with incredibly small steps, though it takes him forever to get from his table to the sidewalk and back, he manages to smoke a couple every hour or so. On his way back to his table, where he, in opposition to his slow walk, limberly climbs up on the stool, he always stops and talks to me.

His words tumble together, and though his eyes tell me that he knows what he's saying, I can't understand much at all. Maybe a word or two will slip well formed through the masses of sound, but that's it for me. Unlike most in the bar, I listen to him, and when he stops I nod. He pats me on the shoulder and continues on to his table.

I've seen him attempt to enter into other conversations, most people try to brush him off before he's finished. While no one is ever cruel in what they say to him, impatience and bother is heard in their voices. You'd think those in their 60's would take a little more time with those, really, only ten or so years older. I can see that he knows he's not understood. Even with me, I know he knows I don't understand. I am relieved that I am not tricking him. I think he pats me on the shoulder just because I let him finish. I think just that moment of contact matters. I know what it is to be dismissed. I don't like it. I don't do it.

Then a couple of days ago, when we stopped by for a beer and a tea, we saw something remarkable. A fellow was sitting at the table with him. I know this man was 20 years younger because, in the course of their conversation, it was mentioned. I overheard because we were sitting at the only vacant table in the place, right next to the old man and his younger friend. Their conversation was a bit louder than others in the bar, apparently, even with prominent hearing aides, the old fellow doesn't hear very well at all.

They chatted about old days, when they were 'boys' in Toronto. They mentioned old friends and old bars. They talked first of those who'd passed away, then of those still living. They talked about ailments along with comparing an inventory of aches and pains. Old people stuff.

But here's the thing.

I had no trouble understanding what the old fellow said. In context of the conversation, as the younger man's words swirled around him, sounds suddenly had meaning attached to them. The old fella was interesting and funny and, occasionally wise.

Who knew?

Certainly not me.

I had made a mistake, thinking I gifted him with time and with listening. I realized that I always waited for him to stop to speak. Always waited for him to initiate. Always sat, kind of tense, hoping that he'd just go along to his seat. While I gave him time, I gave him nothing else.

Next time I am going to start the conversation, I'm going to create context, create the means for sound to become words.

He had reached out to me. Always kindly.

I just had never reached back.

No wonder there's never been connection.

Sunday, August 11, 2013

My German Boyfriend

A few weeks ago I was sitting in the back row of a movie theatre. The theatre was almost empty and those that were there sat down towards the screen. The climb up to my seat was steep and, in the dark, treacherous.

I hadn't done that in years.

The experience brought back memories, lots and lots of memories.

Being in high school and going to the movie theatre in Trail. Climbing up to the back, way up back, to sit where it was cool to sit.

Seeing Star Wars for the first time, in a packed theatre, in one of the few remaining seats up in the Gods.

Feeling resentment the first time I used disabled seating, typically so close to the screen, and looking, longingly at the seats up top.

So I sat there and waited for my German boyfriend, feeling terrified that we may be caught, hoping he was able to bring me the money he'd made from selling black market diamonds.

A few days ago I was riding my bicycle through Washington and Idaho. I could feel the air rush around me, touching me, caressing me, as I biked pell mell down hill.

I hadn't ridden a bike in years.

The experience made me remember.

I always walked in the Dominion Day parade alongside my decorated bicycle. We would spend hours and hours and hours making the decorations and carefully applying them to the bike. I was one of the few boys who did this and though some thought it was wrong for boys to parade that way ... I thought my bike was beautiful.

I had an odd bike when I was a kid. My parents bought it second hand and when I first saw it I thought it was an abomination. It was unlike any other bike in town. It had a completely covered chain. I was at the point in life where I valued sameness - something I grew out of, not everyone does.

Taking a playing card and attaching it so that it made a 'whap whap whapping' sound when I rode it was the ultimate in cool one summer, Every kid did it. For about six weeks the town was full of the sound. Then, one day, parents rose in protest - that ended that.

So I rode my bike, carrying my boyfriends ashes in two purple bags tied together with long string and looped around my neck He wanted me to take him home to Buffalo.

I think the reason I read, every day, is that every time I do I have new experiences that remind me of old one. Watching a movie or a television show is cool and all, but I find it a more passive experience than reading. When reading I enter into the story in a different way, I get to participate as the words form pictures in my head and my imagination is engaged in set design and lighting.

So it is vivid to me, that experience of walking up the stairs to the back, the experience of getting on a bike and the magical ability that come with it - the ability to create wind. I feel and I experience things both different and new and old and familiar. I think of things and remember things long lost to me.

When I first became a wheelchair user I remember someone saying to me how sad it was that I'd never be able to run again. Forgetting that by that time I hadn't run in years - I challenged that thought. I could still, I said, create breeze simply by pushing my wheels quickly.

But now, I think I would say that as long as I can read, I will always be able to climb stairs, ride bikes, run fast ... I will be able to travel through time, travel through gender, travel through space just by picking up a book.

I end every day by clicking on my bedside light and opening a book to read, to become someone else for a few minutes. When I put my bookmark in place, close the book and set it on the nightstand, I'm always glad to be back home - in me. The best way to go to sleep is knowing that, ultimately with all the lives I could lead, I'm happy to be in my own skin, in my own life, and, of course, in my own bed.

Saturday, August 10, 2013

The Purpose of Apology

Do you ever wonder the purpose of apology?

Sometimes I do.

There is a fellow who comes to visit his girlfriend, a very pretty young woman, who lives a few floors up from our apartment. He's a handsome man and together they make a striking couple. I've never really liked his girlfriend, I find her cold. I've never been sure what it is that she doesn't like about me, weight, disability, sexuality. She is only marginally nicer to Joe so I think maybe it's a combination of things.

We've seen them together a number of times. He, unlike his paramour, will say 'hello' if the circumstances arise and on rare occasions has chatted about the weather. However, he never, ever, speaks when the two of them are together.

So be it.

Well the other day he was in the lobby of the apartment building, a little distraught. He was carrying a single rose and was about to dial her entry code. He saw us, recognized us, and we let him in.

We rode up in the elevator with him and I asked if he was 'OK'. He said that his girlfriend had recently had a miscarriage and they were both having a very difficult time. They were planning to move in together and start a family. Now, well, now there seems to be nothing but hurt and disappointment.

I was surprised that he was so open and so talkative but I guess at that moment we were like passengers on a bus. When the door opened and we moved to get off, I held the door for a moment and spoke to him seriously about how people respond to tragedy like this, "don't look to assign blame," and "if either of you need to be angry, be angry at the situation, at the fates, but don't be angry with each other." He listened quietly.

Just before I got off he said, "You are a very kind man. Thank you. I apologize for all the jokes that we have made about you. We should never have done that. You have a big heart."



I had not known that they had made jokes at my expense. I'm not entirely surprised, it's not uncommon.

It's clear that at that moment he was feeling grateful and as I had gifted him with time he wanted to give me something as well.


I'd have been good if he'd just said 'thanks.'

I'd have been good if he just decided at that moment that we would no longer joke and make fun of people who look like me or move like me or love like me.

I'd have been good if his apology had been deep ... and silent.

I think he meant to give me a gift.

He didn't.

Friday, August 09, 2013

Thursday In a Park With Joe

Joe and I got up early to cut up watermelon and to assemble it into a Watermelon and Tomato salad. I was attending a team meeting in the park, a pot luck, and we were hoping to get there in time to find a table for the group. We found the perfect spot. But. It wasn't. The sun was too strong and soon we were frying. Joe spotted a table way over under some trees.

Soon the table was claimed and then Joe and I headed over to join folks. I was in my manual chair and it was really hard to manoeuvre over the grass and soft ground. We're fairly experienced in this kind of thing so we used a strategy that typically works. We turned the chair around and went backwards. That way the big wheels were able to get through and over and past. It was a fairly long way and though I helped as much as I could, it was a hard pull for Joe. I could hear him puffing as he worked to get me where I was going.

Once there we turned the chair around, I swung the footrests over and pulled into the end of the picnic table. We ate, we talked, we laughed, we strategized, we shared ideas, we enjoyed the day, each other's company and as a result we accomplished what we set out to do.

It was lovely.

The food was awesome.

Everyone needs to experience pavlova in a park.

Afterwards I met with a smaller group as we had a few things that we needed to clear up so that we could move forward with clarity.Again, the setting made it all easier. Again, work got done and relationships got built.

But, that's not what I wanted to write about. That's just the backdrop.

After we got in the car, I leaned back in my seat and just luxuriated in the feelings that came from sitting in a park, with a group of people, under the trees, on a warm day, sharing food. My wheelchair isn't suited to getting to where I wanted to go. The tires dig in too deeply, the terrain has a thousand and one little barriers.

But I had more than tires.

I had Joe pulling me along, taking big breaths of air as we worked together to get to where we were going.

I felt grass under my feet.

I felt shade on my shoulders.

I felt completely included.

But more ...

I felt lucky.

For having wheels.

And having someone to help me along.

Thursday, August 08, 2013

Space At the Table

Yesterday I told a story about some unseen forces directing the collection of data, first in an institutional setting and then in a community setting, in order to statistically prove that freedom is better than captivity for people with disabilities. I made a claim that this experience was unique to those with intellectual disabilities.

That's what I said.

What I didn't say was that the kind of social expulsion that happened to people with disability doesn't happen to others. I didn't say that people with disabilities are the ONLY minority in which there is a need to prove worthiness to exist in the public sphere. I didn't say that what happens to people with disabilities is worse than what happens to anyone else. I didn't say those things.

I also said that people with disabilities had to go to the supreme court in order to have involvement in medical decisions made about their bodies. I used the case of Eve as an example. There are so many examples. The castration of men with Down Syndrome and the marketing of their testicles for medical research. The existences of policies in agencies, today, that forbid marriage, forbid dating, forbid sexual expression and the use of drive reducing medications on thousands of men with disabilities. I believe that the Ashley Treatment is unique to the experience of disability - and a frightening display of the use of medical power on the bodies of women with disabilities.

What I didn't say was that people with disabilities are the ONLY minority to experience the scalpel as a weapon of war. I didn't suggest that other victims of prejudice don't experience inequitable medical care and neglect when it comes to health care and other issues vital to life.

Yet many people took issue with what I was saying. "Yeah, but what about, what about, what about ..." It was as if in asserting that people with intellectual disabilities had and have a unique history I was attacking the existence of and experiences of others who face similar, though different, aspects of prejudice and violence.

I notice the same kind of thing when I talk about my experiences as a gay man. I am mostly, but not always, met with a reasonable degree of understanding, and occasionally even, shared rage. I rarely have people say, 'you can't talk your unique experiences as a gay man because others have it too and you are leaving them out.' But when I speak about my experiences as a disabled person, I am often challenged about these experiences. Some claim that they are neither are real nor valid. That they don't equate to the prejudice experienced by others in real, legitimate, minority groups. I think this is evidenced by the fact that prejudicial treatment of other minorities has made it into language. Sexism, racism, homophobia are words and concepts that have come into common usage. Virtually no one, outside the disability community, in my experience uses the terms 'ableism' or 'disphobia.' I've never heard either word used on a news broadcast or in commentary on crimes against people with disabilities.

I realize that alot of this is about access to public space with the same rights and freedoms of others. I get that. I know that, for example, when I go out, space will be given to me grudgingly and often with hostility. I am not perceived to have the same right to space as anyone else. But I also believe that there needs to be a 'right to space' within the discussions of the complexity of prejudice and the unique ways, we all experience lives in our bodies and in our neighbourhoods and in the broader community.

People with intellectual disabilities, like every other minority, have unique experiences that result in important stories to tell. It is in the telling of those stories - and in the listener having the ability to hear those stories for what they are - and that includes understanding that they are not a challenge to the existence of other stories from other people. What these stories do is give an understanding of the length and breadth of prejudice, they give insight into the commonality of the experience of 'outcast' even when the experience isn't shared.

A man with an intellectual disability and a mental illness was shot by the police on his way to a convenience store. Some of the facts about this case mirror what happened to Trayvon Martin. It would have been outrageous and insensitive to begin shouting 'But that happens to other people to, what happened to Trayvon is not so special, there are lots of people who experience violence as a result of who they are and how they carry themselves.' What happened to Trayvon is unique to the experience of racism - the combined factors, far, far, to complex to understand, would disintegrate, without an understanding of the role that racism played in his shooting. In fact, any protests that 'he wasn't unique' ... 'it happens to others too' ... would result in taking the intense scrutiny off what actually happened. And scrutiny is exactly what's needed.

I believe that black women and white women experience different sets of prejudices. Maybe I'm wrong, maybe all I've read is wrong. I believe the concept of 'intersectionality' is one that gets us to look at how being gay and being disabled (for example) intersect and the experience of the layering of ableism and homophobia. They are experienced as different things, when experienced together it can be overwhelming.

To suggest it's all the same is to suggest that the solution is a ten minute class on diversity that consists of a power point presentation saying 'be nice.' The class would take ten minutes, because, of course, the presenter would have to fiddle with the projector for nine minutes. Classes on diversity get participants to look at the kinds of ways that prejudice shows itself - the kinds of attitudes that people carry - the depth of prejudice - even in the words we use.

I believe we have a responsibility to tell our stories, our unique experiences.

I do not believe that telling those stories diminishes the importance of other stories.

I believe that recognizing that prejudice is prejudice is prejudice is a healthy way to view the unity of the civil rights movement.

I do not believe that that recognition requires a silencing of stories, I think it requires an explosion of them.

In the end I want access to public space, but I also want access to space at the table of disenfranchisement. Not only that, I want access to time to speak.

The other day I was telling a woman about an experience of lack of access, she said, and I'm quoting, "That's nothing, let me tell you what happened to me ..."

I don't want our history lost because we are afraid to tell it, afraid to delineate the unique journey of the disabled community because when we do we'll get shut down and lectured about how, 'wait a minute' your history isn't worthy in the telling'.

Wednesday, August 07, 2013

Jenny and Eve and the Statistics of Freedom

Many, many, years ago, I was hired to work in an 'experimental' group home. I wanted the job so badly because of the 'experiment' being run there. A group of people from a large facility, all of whom had relatively significant disabilities, many of whom had some significant problem behaviour, were to be moved to a community group home. Before they moved, data was collected on their daily living skills, their interactions and their problem behaviour. Once the data weighed enough, they packed their bags and moved.

We, who worked in the house, from supervisor's supervisor to we, the direct support providers, knew nothing of the specific skills, interactions or behaviours that had been the subject of such scrutiny and scribbling. We knew it had been done, but that's all we knew. We were just to go about providing service in the way we normally would. And we did. With gusto. This was the era in which the idea was dawning that maybe, just maybe, people with disabilities had a right to take their place in the community, as citizens. We all believed in that passionately.

Then, on occasion, measurements would be taken of the lives being lived in the community. Data was being complied. You see, what was being measured was simply the effect of living in the community on people who had been jailed for the crime of difference. Since we didn't know what was targeted, we couldn't work on any goals specific to what data had been collected there. Any changes, then, would be attributed to the experience of living in a neighbourhood, living with a certain degree of freedom.

Once we all knew the POINT of the research, the cost seemed high. We desperately wanted the people we had come to truly care about, truly value, to do well. To prove something to someone so that others could have the chance of coming home. We waited with anxiety to hear the results.

Well, it turns out that people simply did better, learned easier and adapted quickly to living in the community. We were relieved.

But think about this: Why would people with disabilities be the only minority group to have to statistically prove that freedom is better than captivity? Why wouldn't that just be assumed like it's assumed for everyone else. How different the difference must be if there has to be a mathematical validation to your civil liberties and your civil rights.



I am sitting in a CBC studio, staring into the world's largest microphone, waiting to be asked questions about "the case of Eve". This case caused considerable debate amongst parents, amongst service providers and, of course, amongst people with disabilities in the self advocate movement. How I ended up there, in the studio, I don't know. But the interviewer told me that she was going to have to ask me, and maybe ask me aggressively, about the issues. Sexuality, Pregnancy, Rights - was all this going too far. She said that it was her duty to ask the questions that would be asked by people both for and against the decision. I told her I was ready. I kind of fibbed.

But as the interview went on, it occurred to me that people with disabilities had proven, statistically, that freedom is better than captivity. I already knew, and it was data not opinion, that voice and choice and all that comes with living freely was a good thing, more than that, a good thing that had benefits as a side effect. So, we went live. The questions flew. When it was over, I went to lunch with the other panelist, to a restaurant nearby and we chatted about the questions. They weren't hard to answer.

The facts were simple. A woman with a disability developed a relationship with a young man with a disability. The school got worried. They were separated. Eve's mother, worried that another relationship might end in pregnancy sought to have her child sterilised. Eve objected. It took a long time but eventually, her voice was heard, right straight across the country. People with disabilities needed to be consulted about issues regarding their bodies.

But think about this: Why would people with disabilities be the only minority to have to go to court in order to prevent surgical procedures being performed on them against their clearly expressed wishes? Why wouldn't it just be assumed that a person's choice, a person's voice, be a determining factor in what is done with their bodies? How different the difference must be if there has to be a Supreme Court decision to support and a group of men in wigs to stand behind one young woman for her voice to be heard?




Jenny Hatch.

Freedom fighters always come in smaller packages than you might imagine. As it has been well publicised, Jenny is a young woman with Down Syndrome who had been forced, against her will, to live in a group home instead of her preferred arrangement with friends. Shut off from others, she had her cell phone removed, had her computer taken away and was restricted from leaving the house without permission or scrutiny. She spoke clearly. She spoke often. She spoke with unwavering commitment. The choice was HERS!! And it was she alone who would make decisions about her life.

Her mother and step-father fought to maintain guardianship and control. They wanted her to live where they wanted her to live, regardless of the fact that her voice was clear, and strong, and consistent. As these things do, it went to court. And right up to the day the decision was made, pundits and commentators stated that it was difficult to predict what the court would do. Sure she was clear. Sure she was consistent. Sure she was passionate about her right to make this choice. But, and to everyone it seemed - it was a very big but indeed, she had Down Syndrome.

Aren't they meek?

Aren't they mild?

Aren't they full of smiles?

We have a trick, we do, those of us who work with or otherwise support people with disabilities. We believe in their competence when they are compliant - when they agree with us, when they submit to our authority, when they bow to the hierarchy of the natural order of things. We determine incompetence when they have the temerity to dismiss our opinions as interesting but irrelevant. Yep, we use competence as the reward for compliance and submissiveness.

But Jenny and her single, strong, voice made it clear that she would be heard. And she was. She won her freedom, she won her choice.

And we already know that freedom is statistically better than captivity.

But think about this: Why is this battle being fought over and over and over again? What is it about the freedom of people with disabilities that is so frightening that battle after battle after battle has to be fought? Why does the idea that people with disabilities are citizens with rights upset us all so very much.


Take a seat, on the bus, right next to Rosa - I think you'd have a lot to talk about.

Monday, August 05, 2013

Simcoe, Thanks For The Day, Dude

Five reasons.



Is sweet.

Today is Simcoe Day, a holiday, and I slept in until 7:30. I never much sleep past 4:00. In fact sleeping to 4:00 IS sleeping in. But I woke up, after only one pee in the night, and found the light on Joe's side of the bed on, Joe reading and a clock that announced I'd had a good sleep.

Yesterday we had lunch with Mike and Marissa and all the kids, Joseph, Ruby and Sadie. We met Joseph's girlfriend for the first time. Can this be the same little boy we met when he was five? We ate, we talked we laughed. It was nice to be a place that was completely accessible so that at no point did we have to interrupt the gathering to negotiate a barrier.

After we got home we decided we'd go out for a cuppa tea on a street patio near us. At the next table were two young men. About the age we were when we first moved to the city. After they finished their tea, they got up, stopped to chat before parting. Then, naturally and without fear, they kissed to say goodbye. Violence did not erupt. The fury of God did not descend. No one much noticed.

Joe and I made dinner together in the kitchen. We harvested from the balcony garden and went to work making a huge tray of vegetarian chili nachos. I did my part. Joe did his part and we chatted all the while. It's part of the routine that comes 44 years in.

Today, the holiday stretches out in front of us. We don't know what we're going to be doing AND we have nothing to do. We seldom get real pauses like this. I'd had stuff to deal with yesterday, stuff that looked like it was going to splash over onto today - but it didn't, and now I know, it won't. So, hours and hours to fill and NO PLANS!

Life is sweet.

I don't really know who Simcoe was.

But, I've decided, I like him.

Sunday, August 04, 2013

The Butt of Her Joke

We were having a lovely lunch, on a lovely sunny day, with a lovely afternoon ahead of us. The food had just arrived, and closely following the waiter was a group of forty something friends. The took a table just behind me, a little to my right. They were a rowdy bunch, laughing heartily at stories that sounded oft told. I don't mind happy noises. People together laughing and having a good time, children whooping as they play, burst of laughter erupting uncontrolled into the air, these almost never bother me.

Suddenly I heard mention of 'spreading asscheeks' and my attention was called away, dog to a squirrel, without my bidding. I was hearing a story told by a woman, with great dramatic effect, about something 'disgusting' she had to do at work in her job with an elderly man. She was a gripping storyteller, no doubt, she was clearly using both the graphic nature of the story and the lunchtime setting to create the kind of discomfort that, used well, can lead to hilarity.


It was his butt.

And that's private.

She mentioned only his first name, which I'm not going to repeat here, so she probably thought that she was following the rules of privacy. However I'm sure he would have been horrified to know that he was the subject of such a ribald and, again, graphic story. Further, her story presented him as disgusting and dirty object and her the poor soul burdened with the job of cleaning up after him. Questions were asked, answers were given. She described a few of the things that she had to do for him, poor dirty soul that he was.

A couple of those things, I need help with.

I was sitting there.

Listening to how horrifying it was to help someone one with socks and shoes.

Listening to how disgusting it was to clip toenails.

Listening to how degrading it was to help another, older, person.

I need to be clear that the whole thing was told in a humourous manner, facts played for laughs. And laughs she got, along with gasps, along with 'oh nos' and 'how awful' regularly punctuating the story.

When we left they had move on to other topics of discussion.

I believe that there is honour in working in service to others. I believe that there is a place for humour and for letting loose. But I believe that there is also a place for privacy, and respect, and all times a consciousness of the  humanity of the people who need and who receive support.

She paid for lunch with the money she made from serving a man that she holds up to ridicule. I wonder if she ever thinks about the fact that his needs allow her to meet her needs and that his rights don't end when her shift does.

Saturday, August 03, 2013

Sometimes It's What You Don't Say

I determined a long while back that I was going to learn to speak differently. I wanted language for a vehicle for expressing meaning, humour, outrage, gentleness, anger, gratefulness ... everything, without using words tinged with disrespect. The 'r word' went long ago. Then, after a gentle challenge here on this blog, I committed myself to eliminating words like 'crazy' or 'nuts' or 'insane' along with 'deaf' and 'blind' and 'lame' when those words referred to anything other than disability. I thought it would be hard to do, it isn't, unless you think pausing for a second to think up another word is hard. But hell, I pause to decide between chocolate and vanilla, and then I pause again to consider the possibility of strawberry ... so pausing isn't the big deal some make of it.

Then, most recently, I've decided that I really don't like the way 'b*tch' flies out of my mouth in reference to complaining or when someone, male or female, does something I don't like. After those other words had pretty much been retired, the stark ugliness, of the 'b-word' hit me. I hear it everywhere and I used it more than I, now, like to admit. So, I've been on trying, really trying, to take it from my speech, and from my writing, and hope that eventually it will leave my consciousness as a word choice all together.

I have many women in my life, I have little girls that I love living in my heart - I don't want, in any way, to contribute to them ever being called such a degrading word. So ... it now part of my journey.

Here's something I wrote on Facebook yesterday:

"So, a couple times ago, the first time we stayed at this hotel, they had NO disabled parking. It was difficult for us to negotiate the wheelchair and luggage in a cramped space. I complained, I was reassured it was 'on the agenda'. I came back two months later and there was still no disabled parking. I raised bloody hell. When I was reassured it was coming I called 'lie' to that - they said it before, didn't do it. I wrote letters, I contacted the parent company. I got reassurance after reassurance that it would be done. So, a year has passed, Joe and I were betting on whether or not the spaces would be there. We both thought 'probably not' ... they were there!! Four lovely spaces!! It really did help. We've dubbed them the 'moan and whine' spaces ... there should be a plaque."

You see where I've written 'moan and whine'? I want you to know that just before I pushed the button to put this on my page, I'd written, out of habit, "b*tch and moan," I saw it, stopped, and you know what? It took me only as long as it takes to erase and to retype, to change the words. That's all.

Less time than it takes me to decide 'Oreos' or 'Chocolate Chip' which admittedly is a big decision.

Less time.

But ... time well spent.

Friday, August 02, 2013

A Tale of Two Women

I believe there at essentially two paths through life. Let me explain:

Joe and I went to a movie in a theatre that has a horrid seating section for wheelchair users. So, I don't use it. I park in the aisle, which is quite wide, beside where Joe sits. We've done that there for over five years. This time, as I was sitting there a woman came in through the entrance way used by disable people. She was a very small woman with a very BIG walker. She made her way up towards me, smiling a greeting. It became quickly evident that there wasn't quite enough room for her to get by. I said, "Hold on, I'll move this way, you go that way, and it should work." Well, it took a bit of moving about but it got sorted quite quickly. She said to me that it was a relief to negotiate space with another person with a disability - "It's nice to just be understood," she said.

She was charming and gracious and graceful.


Today, Joe and I stopped for lunch on the road to Ottawa. We sat in an empty section because it would have been difficult to negotiate through a crowded restaurant. We appreciated the courtesy. Just after we ordered I noticed, through the window, a woman coming in, once again using a very large walker. She entered the restaurant and requested the same area as where we were. She was clearly a regular. The fellow brought her over our way and suddenly they were standing near me. I asked, because I couldn't see, if there was room for them to pass. She said, "No, you take up too much space." She turned to go towards the restaurant. I was trying to move into the space between tables in order to make room, but she was marching, angrily, towards a table in the other section.

She was not charming nor gracious and certainly not graceful.

Two people, one situation, two very different responses. I have come to believe that, often, it's not the situation but the attitude you bring to it. The first woman was willing, and even pleased, to work through to a compromise and find a solution. The second woman went to anger as a default position. She didn't even WANT a solution, she seemed to WANT to be angry.

I'd like to say that I'm more like the first woman but I think I may have 'second woman tendencies.'

Immediately after she left, I realize that life had handed me a lesson.

I hope, I really hope, I learn from it.

Thursday, August 01, 2013

August Newsletter is OUT

The new issue of the Direct Support Professional Newsletter is out. This month Support, Service and Success addresses the issue of summer vacations for people with more significant needs. If you have NOT received the newsletter and are expecting to, you've fallen off the mailing list - please contact me. If you'd like to subscribe, or to receive just this issue, please contact me but be very clear about which you would like. My contact address for subscriptions is Subscription requests that come to my home email address cannot be processed - sorry.

Todays post follows.

The Morning Ride, The Morning Chat

I had almost been lulled to sleep by the movement of the bus when we turned sharply and then came to a stop. A very young woman with Cerebral Palsy got on the bus and moved, smoothly, into position to be strapped down. I said, "Good Morning," she answered, "Morning," and waited to be strapped in. I am familiar with many of the disability accents and had no difficulty understanding her few words to the driver, who was having a little more difficulty making out her words. I know better than to intervene in situations like this, and, really, in little time we were on the go again.

As a morning person, I know that I have to be careful about engaging non-morning people in chit chat. But I do give it a go on the bus, when I find another morning person who is also a talker, the ride goes so much more quickly. The young woman answered a couple of questions in one word answers and her tone was gruff. "OK," I thought, not a morning person.

A few minutes after I gave up she spoke. "Sorry," she said, "It is difficult for me to speak." She said that line like she'd said it a thousand times before, the words were well oiled and produced as after a lot of practise.

We rode in silence for a second.

Then curiosity got the better of me.

"Is it that it is difficult to speak or that it's difficult to put up with the impatience of others?"

She looked at me. Hard. Then, suddenly, she started laughing. Really laughing. She was shaking in her chair.

I was confused, I wasn't meaning to be funny. I still, as I write this, don't think that it's a funny line.

When she calmed down, when she'd wiped the tears from her face, she said, "You got me."

Just then we arrived at her destination, she wished me a good day, and she was gone.