A Boy, His Mom and The Truth

Note: I have permission from both people in this story. I agreed only to wait several weeks before writing it so that no one would be able to place where it happened in time. I think both mother and son for allowing me the honour of documenting our brief encounter.

I rolled in through the entrance of a very large mall. I quickly scanned the area looking for a place to pull off to the side. As a wheelchair user I find this really difficult because no matter where I park, I end up being made to feel in the way. Even so, I look for a place to tuck myself in and wait for Joe to park the car and come and join me. I find a spot, turn the chair and back up.

A few feet away from me I hear a protest, "Mom! Stop it! Stop it!" I turn to see a little boy with facial differences, he is glaring at his mom, clearly angry. She is looking at him, confused. "What?" she asked, "What are you talking about? Stop what?"

He pointed at me, he knew I saw him, he didn't care, he was angry at his mom. "You were staring at him. You were. You were STARING."

I admit, I hadn't noticed her staring at me, I'm not surprised that she might, as it happens all the time, but I hadn't noticed at the time. He clearly did though and he was angry about it.

"Staring is wrong, Mom, you know it's wrong. It's mean, it's really mean. It's like calling names over and over and over again. It's like saying 'You are different. You are ugly. You don't belong.'"

Mom is clearly devastated, she starts to cry. She reaches for him, to pull him towards her. He won't let her. He steps away from her. He looks at her like she is the enemy. He looks at her like he's seeing her for the first time. Now, he starts to cry. Standing alone. Crying.

People are staring at them now.

I move my chair, I pull in, not close, but in such a way that I can block the view of onlookers. One of the benefits of being fat is that I can provide shelter. This is one of the moments that I'm glad of that fact.

Finally he falls into her arms, "It hurts mom, it hurts. You shouldn't do it because it hurts."

"I know, I'm sorry, I know, I'm sorry. I know, I'm sorry," she says.

She looks up at me and says, "I'm sorry," then indicating the privacy I've given them, "Thank you."

She's still holding him. Quietly she asks, "It happens all the time?" He nods his head. "Why haven't you talked to me about this?"

He grabs tighter.

"I didn't want you to be ashamed of me."

Pain covers her face. She knows what he faces. She knows his difference will call attention to itself his whole life long. She knows, now, for the first time, that she has to parent him honestly. Her love has to be evident and her love has to include his difference in a real way.

"How can I be ashamed of someone I love so much?" she asks.

"But my face ..." he began and she cut in, "Yes, you have a face that's different than other people's, but you have a heart that's bigger, you understand the world in a whole different way, and you will grow strong enough to be different and proud of it."

He calmed and looked at me. Joe was standing beside me now. He saw how the chair was positioned, he knew something was happening so he waited with me quietly, adding to the shelter. After considering me for a second, he asked, "Is what my mom says true? Can you be different and proud of it."

I answered in a word, "Yes."

Password Jungle

I am lost in a maze of passwords.

I can't get into several accounts because the passwords have changed.

I even got an app that helps remember passwords and I forget the password for that!

I've had no time to write a blog this morning because I've been trying to book bus trips for next week and can't remember the freaking password.

Why am I writing at all then. 

I got the secret question wrong so many times they've timed me out ... I have to wait 15 minutes before trying to remember the answer to a question that I answered a couple years ago.

There has got to be a simpler way to do all this. 

Any password hints anyone?

Does anyone else go through this?

Choices That Aren't Choices

On our way to our hotel this weekend we received an email from our hotel telling us that the room we booked wasn't available but that they had another accessible room, a smaller one, that we would be able to use. The email gave a phone number we could call, so, I did.

I was annoyed. I'm careful with booking rooms, we'd booked a one bedroom and were going to be given a studio. We need the space we booked, which is, of course, the reason we booked it. I get up earlier than Joe to do work and to do my work out. The new room would allow us the different rhythms of our mornings.

In speaking to the woman from the hotel she assured us we could move to the room style we wanted the next day so we just to 'decide' what to do for that one night. Her choice was that we could stay in the accessible studio or we could stay in a one bedroom that wasn't accessible. She waited for me to make my decision.

I was silent, not because I was deciding but because I was struggling to remain calm. Finally I told her, "This is not a choice. I told you I was a wheelchair user. You are offering me, as a choice, a one bedroom inaccessible room. You do realize that if I could stay in one of those rooms, I would have booked one of those rooms. I'm guessing you went to a training somewhere where you learned to give options and choices and you don't want to acknowledge that because I have a disability I actually have no choice. I've got to take the room you are offering, the one I didn't book, because it's the only one I can stay in."

She started to speak, but I wasn't done ...

"I want you to know that offering me a choice that I can't take is insulting and maybe even a little bit cruel. You know that I am a wheelchair user, it's on my profile with the hotel, I've already told you that and you are saying that if I want the room style that I ordered, then get out of your chair and walk. It's like a kind of taunt. I'm upset that I'm not getting what I booked, but I'm even more upset that you would give me a choice that isn't a choice and a choice that I obviously can't take because I'm in a wheelchair. What kind of person does that?"

She started to speak, but I wasn't done ...

"I'm going to take the room I didn't book for tonight and then move to the room I did book tomorrow. But it's a lot of work to do that. It's a lot of packing and unpacking and effort that I'd rather not expend. But I'm going to take it, you know that I'm going to take it, but let's be clear it's because it's my only option not the result of a choice that I was never able to make."

She than said she was sorry.

We chatted for a moment, and I rang off.

She offered me an inaccessible room as a choice! It makes me wonder how non-disabled people understand disability, or if they do at all.

When Not Doing Is Doing

I was pushing my way towards the movie we were going to see. Joe was in the line up getting tea. The carpet was plush and I was getting a real workout for my shoulders. I could feel that my thumbs were getting tired from the heavy pushing. But I'm enjoying taking the challenge and getting myself where I need to go, on my own speed, with my own strength. Joe is good with this, though it's taken him some getting used to. I think when he sees me struggle, especially against a thick carpet, he has to hold himself back from jumping in to help.

I was nearly to the turn when I felt the presence of someone coming up behind me. I turned to look and saw a man that had been a few ahead of Joe in the line up at the concession stand. He saw me see him and said, "Well, he isn't much good as a help is he?" He was clearly annoyed to the point of anger. I have to admit I kind of got angry too, this was Joe he was talking about. The guy who has supported me, in every way I've needed it, since I became disabled.

"Right now," I said with edge in my voice, "he is being more help than you can possibly imagine."

The fellow blew air and said, "What, getting popcorn?" I decided not to correct him, I don't eat popcorn any more. I said, "No."

"What's he doing then?" he asked, he'd slowed to my pace. I didn't stop pushing as we talked. This is something of a breakthrough for me. To push on carpet and still be able to speak is a bit of a victory.

"He's letting me do this by myself, without his help, that's harder for him than you might imagine."

His face did the mental calculations about what I was saying in front of me. It was kind of funny.

"Oh," he said finally, "I get it."

By then we were at the movie theatre and I decided to pull/push myself up the ramp. I do this by pulling on the handrail with my left hand while I push my right wheel with my right hand. He watched me for a second inch my way up.

"Can I ..." he started.

"See, it's hard not to help isn't it?" I asked as I continued, on my own up the ramp. He shook his head as if he couldn't comprehend why I would want to do this.

By the way ... I made it.

A Confused Kind of Gratitude

Today is Thanksgiving Monday, a day off, and I'm here in the United States where it's Columbus day, a day off. I've been sitting here thinking about what to write today as I've been thinking about Thanksgiving and living a life of more intentional gratitude. But then, I keep getting struck about how hard this is for me, not because of something inherent in my personality, but because of my life with a disability. I'm often in situations where I am really confused about how to feel. And, more, when, through that confusion I feel something, I'm conflicted about whether or not what I'm feeling is the right feeling.

Let me give you an example. We drove a massive long 11 hour drive yesterday. This included two stops. Both were precipitated by having to pee and both were used as an opportunity to move around a bit. In both cases we stopped a grocery stores because we wanted to pick up some stuff because we are staying in a hotel with a small kitchen.

On our second stop, we came out of the store, which was surrounded by trees bursting into colour, and as it was raining, I waited underneath the awning for Joe to get to the car and get the door open for me. I watched him as he walked across the lot which was slick with rain and over which a number of leaves, bright yellow, had fallen. The lot looked lit from below with lights the colour of fall. I was enjoying just sitting there, quiet, watching everything. I amused myself by noting that I must be feeling sentimental or romantic or something because I was waxing poetic over a parking lot.

Into this lovely reverie came a voice. "You want me to push you to your car?" I look up into the face of a woman, smiling. "No, thanks, I'm good, I'm just waiting.?" She asked me if I was sure, she told me she was strong, which is code for 'I know you are fat,' and I told her that it was fine, I was waiting and when I needed to I could get to the car myself. I thanked her for her offer and watched her walk away.

The moment was gone.

All I wanted, I realized, was to simply enjoy those few moments alone without my disability being perceived as permission to interrupt my reverie. I just want to be able to sit and wait in places without being pulled into other people's need to help people like me. Somehow I feel that I should be grateful, or thankful, that there are people who would help. And I am. I just want people how would be willing to help if help was indicated or asked for. I don't need help when sitting quietly on my own. Other's might I realize, but I don't.

See. It's confusing. It's good that there are helpful people. It's not good to be perceived as always needing help even in moments when you clearly don't. I wasn't the only one waiting in the rain but I was the only one who was asked if help was necessary. There was a man, struggling with too many bags who could have used a hand. No one approached him, so it's not the state of needing help that causes people to rush in, it's the state of having a disability that defines one as a being that needs help.

So. I was polite but I felt angry. Angry that the few moments I had of watching Joe get the car ready for me to get in, while looking at the beauty of my favourite season, and the warmth I felt at just being there, being alive and being together.

I pushed off and headed down to the car, easily gliding to a stop to where the door had been opened. I got up and hopped into the car. I took a breath, reminded myself it was Thanksgiving, and took a breath of fall air and once again felt grateful.

Solid Ground: Canadian Thanksgiving

It is Thanksgiving Sunday here in Canada. It's a day that has interesting roots. The very first Thanksgiving in Canada, according the the historians at Wikipedia, was in 1578 during the search for the Northwest Passage. Martin Frobisher and crew had a very difficult time of it what with the ice and the storms that they encountered. They lost ships and building material and often got scattered, one boat from another, but somehow the 'miraculously' made landing on Baffin Island together. They gave glory to God in Thanksgiving for their "miraculous deliverance in those so dangerous places."

I don't think there is a person alive who, every now and then in their lives, gives thanks for just getting through, for surviving. I also think that every single person know what it is to feel awe at the miracle of just getting through another day, another month, another year. Life, a fact they did not tell us as children, is hard. Adulthood is hard. Responsibility is hard. Accountability is hard. It's all hard. It's wonderful. It's exhausting. It's trying. It's exhilarating. It's fun. It's all those things, but mostly, it's hard.

So many times in the last few years I've been thankful for just getting through and getting by. In those moments of thankfulness I always think of those who have helped me. Those I know. Those I don't know. I'm always thankful that there are those who've had helping hands, or helpful ideas, or helpful suggestions. I'm glad that I have strong people about me. I'm grateful that I have wise people about me. I'm especially in awe of the fact that I have people about me who challenge me to do better and to be better.

I will never know what those sailors felt when their feet touched solid ground. I can't imagine the joy in their heart as they celebrated what would become Canada's first thanksgiving.

But I do know what it feels when I reach the shore at the end of another week and what it feels like to climb onto solid ground. And I, like the sailors, am grateful.

Here's to being thankful for solid ground.

Here's to a year of finding more, on the journey through the passageways of our lives.

Funny

Yesterday we went, again, to the patio where we like to have a tea. It was another lovely warm October afternoon. I spotted a table with a chair, empty and waiting for me. I scooted ahead and pulled in beside the table. Joe had asked me to go on ahead because he wanted to pop into a shop and pick up a copy of that day's Star. He's addicted to their crossword puzzles and, overall, it's a pretty good newspaper. I obliged him and sat watching for him to come. There are only two tables on the patio, an absurdly low number for the space and they are in high demand, I was pleased with having got one so easily.

Toronto is a friendlier city that people give it credit for and I wasn't surprised when a fellow, with a hot cup of coffee came by and asked me if he could use the chair beside me. I told him that he could but that I was waiting for someone. He said, "Oh, I thought you were alone." I said, "No, as much as it surprises me to say this, I'm not alone." He looked at me quizzically, I continued, "When I was younger I thought I'd always be alone that no-one would love me, and I was thinking when you came by about that."

Then I realized.

"Sorry," I said, "that's way too much information. I was just caught off guard by what you said."

He nodded. "I am the opposite, I was popular in high school, had my pick of girls, everyone liked me. I thought I'd never be alone. Funny how life turns out." In that moment there was such sadness at the table. He got up and said, "I'm glad for you. I'm glad you surprised yourself and probably a lot of other people."

I didn't know what to say back to him. Anything that came to mind was too cliche and too trite for the sadness he felt. I just truly wished him well.

Then I saw Joe across the street, smiling at me, heading over for tea.

The Man Who Talks To Birds

It was a surprisingly warm day for October. Joe and I decided that we'd head over to our favourite place to have tea, a shop with a very small patio. We lucked out and got a table. Joe went in and got our drinks and we set about chatting and people watching. It was a lovely way to spend a late afternoon on a wonderful fall day.

Shortly after we arrived a man came along, with a great big bag of bird seed. He reached into the bag and pulled out a large handful and threw it over the sidewalk and patio. Birds flew from every direction and began pecking at the seeds. He then set the bag down, bowed to the sun, and began talking quickly in whispered words to the birds. It might have been a foreign language, but I think not, I think he was speaking directly to the birds in a language that, oddly, they seemed to understand.

The birds, unlike many of the people sitting around the patio, did not seem to be afraid of this man. This rail thin man. This man who walked quickly and slowly at the same time. This man who saw only the birds. He saw a bird, alone, not eating seed over near my table, off to my right side. He came over to the bird speaking to it passionately, pointing to where the seed had been cast. But then, the bird showing neither fear or interest, he bowed to the bird and came back to where the other birds had gathered.

Many others, out on the patio, quickly gathered up their things and left. One or two not liking the birds, all the rest quite fearful of the man who had done nothing but toss seed and talk passionately with the birds. He scared them. Neither Joe and I were scared of the man or of the birds. I am a closet bread tosser to birds in parks person, I like birds, I like seeing them fed. Feed The Birds was my favourite song from Mary Poppins.

As we were leaving we passed him as he was packing up his bag of seed to head out somewhere else, to some other flock, I said to him that I had enjoyed watching the birds and then thanked him for creating this experience for me. He hadn't seemed to be listening but when he heard the thank you he seemed startled and then looked at me closely. He said, "aren't they beautiful, did you know they could fly?" I said that I did. He nodded seriously, "Good, it's important that you know."

I felt sad for all those who had fled this man who talks to birds. Because even though he talks to birds, people need to know that he talks to people too."

S/he Shoots, S/he Scores: filmed by a stranger

We were at an arcade and Ruby had challenged me to a game of air hockey. I've not played in years. I found that being in a wheelchair I didn't have the reach necessary to be able to play well and, frankly, I didn't have the endurance either to be up, leaning forward and reaching my arms out. But, I figured I have more strength now, I might have more reach too. Well. I did.

I was having a blast. The puck flew back and forth between Ruby and I. At one point I forgot and had my fingers over the ledge, to help me hold my body in position, and the puck slammed into them. Youch! That hurt!! Apparently it was also very funny. The game grew heated and we were tied for most of the game, one person scoring and then the next catching up. Ruby was determined to beat me. I was determined to be the winner. We screamed when we got goals, we screamed when we were scored on, and we played, hard.

A little while into the game I noticed a woman standing off to the side with her camera up. She was filming us playing air hockey. I don't like strangers taking photos of me or of the kids. I don't trust the motivation. I glanced at Marissa, Ruby's mom, and she shrugged and said, "I don't see what's so interesting you need to film it." I agreed. But then, before we could do anything. She stopped. The camera came down. She seemed satisfied with what she had filmed and moved on.

There are pictures of me, placed on the web by strangers, that can be found amongst other pictures of fat disabled people. Put up to mock and put up to shame and put up to demonstrate what ugliness, or laziness, or sloth looks like. I became aware of these a couple years ago and know that there's nothing I can do about them. They are there. But because of these I am very, very, cautious around strangers and cameras. I don't think anyone has taken a picture of my, without my consent, in a couple years now. I know how to avoid the gaze of a camera and I know how to speak to those who would violate my privacy.

This time I felt a little different. If this was ever put up to mock me, people would see a fat guy in a wheelchair having a blast playing air hockey against a 10 year old girl who was a fierce opponent. There may be shame in intention but there's no shame in the image.

But, then, I don't know her motivation. Maybe she was just intrigued by what she saw. Maybe playful, happy, disabled people aren't in her emotional vocabulary about disability. Maybe children and relationships and love and passionate life aren't in the definition she has of disability.

I don't know.

And, I kinda don't care.

Strategies, Tired, Old Strategies

So, we'd made the reservation. I'm careful with reservations. "Fully accessible!" I'm told by a chipper person who's taking down the details regarding time and number of people attending. "Fully accessible," is a term much mistrusted in the disability community. At least my immediate community tenses with caution when hearing that two word phrase.

We get there and there are two steps up to the dining area. I said to the host, "I was told this was fully accessible." He smiled, as if I'd made a joke, "Well, we're kinda accessible." There isn't any such thing as "kinda accessible." He showed me a flimsy fold up ramp that can be put out to go up the stairs. Now at my weight and the weight of whoever is helping me, we aren't getting up that ramp. Secondly, even if we get up the ramp, there is no where to go. The space between tables is so tight that those who walk have to turn sideways to get through.

I'm angry.

I know that it's not the host's fault. I know that. I know that the people who run the restaurant know that too ... the one's who really are at fault. The one's who encourage their staff to say, 'fully accessible' and the one's who rely on the good manners of customers facing barriers to not yell at staff who have no control. I want to yell at the host. I really do. But I don't. He's working for a paycheck. He doesn't own or run the business. He has to deal with people all day. I want to give him a message to management but I wonder if he ever even sees them.

But.

I'm angry.

I found a place where I could get up from my chair, use the handrails to make it up the two stairs, and then get the chair under me and in at a table. It was difficult and it was dangerous, but I had planned this, it was a special occasion, and I wasn't going to have it be my disability, again, that caused problems.

Because it's not my disability that's the problem, but people find it easier to blame what's present, the disability, rather than what's not present, actual accessibility.

So, I acted calm but ate angry.

In the end, I had fun. Well, that's not quite true. Part of me had fun, part of my was using tired old anger management strategies just to get me through lunch.

The "Ramp"

"Oh, yes, we are fully accessible."

So we arrive at the Skylon Tower in Niagara Falls aiming at spending time in the arcade and then going up for a birthday lunch for both Ruby and Sadie who have September birthdays. I get out of the car and into my chair and roll over to the "ramp." The "ramp" is steep. Really, really, steep. It doesn't even look like it was intended to be a wheelchair ramp. I look at Joe and the girls and say, "We can't get up that."

Joe nods slowly, looking at the ramp. The girls look concerned. They have gotten used to barriers, but they have also gotten used to us figuring a way around most of them. This one, we all know, is a really big barrier. Ruby runs to check to see if there is another, actual, real, ramp. There isn't one. I really don't know what to do.

Then, I notice a fellow in a scooter along with a woman using a cane coming along with their family. There are five of them in total. Along with the two disabled folks there are two teenage boys and one triathlete kind of woman. They stop, look at the ramp, and say, "We'll get you up that ramp." I decline their offer, knowing that it's our only chance of getting up the ramp. But, like many people, refusing needed assistance is hardwired into my DNA.

The fellow in the scooter, a man about my age, says, "We've got young people with us, they can get you up that ramp, no problem." I look at one of the boys who looks horrified at being pulled into this discussion, not because he's a bad kid and not because he's indifferent to the situation but because he's a young teen who doesn't want to be pulled into any situation not exactly of his own choosing, and make a joke about him having to push me up the ramp.

Then I see Ruby and Sadie watching. They are seeing a small community of people, pulled together by circumstance, inaccessibility and disability. They are seeing one man with a disability offering help to another man with a disability. They are seeing that sometimes the solution is the willingness of other people. I accept.

In an instant they are behind me. Joe, the incredibly strong woman and the two teenage boys. I'll add here that I also put my back into it and grabbed my wheels and started pushing. No passive acceptance here. In moments we are up the ramp, we all say goodbye and they are off and we are off.

Later when their mom arrives we tell her the story and I see the girls listening and nodding along to my explanation of how we conquered the ramp that wasn't a ramp and made accessible what wasn't accessible. As I told the story I could still feel the moment, half way up the ramp when everyone was flagging, that I felt the woman put her hand on the back of my wheelchair and PUSH. That was the moment that I knew we'd make it.

Community is community is community.

And sometimes I really love this disability community of mine.

Trapped!!

I came round, like I always do, to the ramp that takes me up to where we often shop. As I did I noticed a big strapping man, with a tight tee shirt over a trim and muscular torso, over his shoulder was a gym bag with the emblem of the exercise facility inside the mall. He was walking quickly down the ramp and following him was his polar opposite. She was old. She was tiny. She looked frail. She walked taking each step carefully, setting her cane down daintily with every footfall. She moved with a speed that belied her look. Careful, tiny, but fast. She was only steps behind him.

He saw me.

I had stopped by then, knowing that the two of them would need to step by me in order to get to the street. I'd pulled over to give them lots of room. It was then he noticed me. He panicked. It was like he was suddenly overcome by guilt for being on the ramp, which he need not have, it's a public ramp and for exiting the building to the east it's way more convenient than the stairs. But, guilt doesn't have to have a viable reason does it?

He turned.

Started back up the stairs.

Like he hadn't seen her.

Then.

He did.

He came to a cartoon stop. With his feet on their toes at a complete stop and his body hurtling and curling over the top of the woman behind him. He managed to pull himself back, his body would have had to work hard to pull that feat off. Now he was trapped. She was behind him and I was in front of him.

He didn't know what to do.

I said, "Come ahead, there's lot's of room."

He apologized and I told him it was unnecessary, it's a public ramp that we all share. He nodded thinking me kind rather than right.

Then, he dashed off.

I waited as the elderly woman also passed by. She leaned towards me and said, "Wasn't that fun!" Then she laughed. I admit that I got the giggles too. "Yeah, it was."

Gonna Do It

I was sitting talking with someone about this weekend coming. I'm a little anxious about it and was expressing my concerns. You all know, because I've written about it so often, I've been working on my strength with a goal to increase my independence when I'm in my manual chair. This came about because, when I'm on the road, I use my manual exclusively. However, as I've moved along with weight training and with pushing myself on trips, the goal has shifted. I now want to be independent in my manual chair, here in my home neighbourhood and not depend on my power chair here. I'd use the power chair for when I went long distances but that's it.

So, tomorrow, I'm going to attempt to roll uphill the few blocks to the mall near me, roll in and roll to the movie theatre. Joe has agreed to only help me on the curbs and let me do the rest by myself. I'll take help only after I've exhausted all other reserves. I'll see how far I go before requiring help. That will be my baseline. I'm under no illusions, I won't make it anywhere near all the way, but I'll know what my endurance presently is and can measure success that way.

It all sounded like a good idea two weeks ago. But now that tomorrow is tomorrow, it's not such an appealing idea. So, I was talking about it yesterday.

A woman with an intellectual disability came by and overheard part of the conversation. She came into the room, patted me on the shoulder and said, "All you can do is try, nothing else matters but that you try." She finished the last part of the sentence with her finger wagging at me for emphasis.

I looked at her and told her that she was right.

"I know," she said, "because I try every day. And that's what matters."

Right.

Got it.

Gonna do it.

A Lesson 63 Years in the Making

I have never fit it.

Perhaps I should say more clearly, I have never felt that I fit in.

As a very young boy I knew deep inside of me that I was different from other people. I lived in a small mining town where boys were boys and girls wore frills. It was the kind of town where when a girl wore pants to the elementary school because it was the deepest of a deep cold winter she was expelled for the day. What a fight that caused. In that environment I had identified somewhere deep inside of me that no one could ever know the secret I carried.

It's a huge burden being a child with a secret.

You fear every day. You fear your own weakness. You fear your trust of others. You fear your need not to be alone with a secret that grows proportionately with your fear of exposures.

It's a huge burden being a child with a secret.

I learned for fear others. Fear being with others. I felt that when I was with others, I had no place to be. No place simply to be.

As a very young boy, I was 'big boned' according to my family and 'fatty fatty two by four can't get through the kitchen door' to everyone else. I was called names every single day of my life. I was called names multiple times every single day of my life. My weight was like a target placed on me. People, boys and girls equally, loved tormenting me. If I'd be standing at my locker some young 'wit' would push himself against the opposite way and shout, 'He takes up so much space!' Some other young wit would point out my chest and bemoan that she didn't have tits like me.

Sitting on a bench was torture, if my body touched others, most often caused by the number of people on the bench, it would result in a 'ewww, gross!' Even though everyone's sides on the bench were touching everyone else's side. I'd be the cause of the tightness. I'd be the cause of what happened to me. I always thought it was my fault.

It's does damage, never fitting in anywhere. It teaches you to hate yourself. It teaches you that there is no where safe. It teaches you that the world, for all that it is, isn't big enough to have a place where you belong.

Years later, becoming a wheelchair user, this was amplified. My taking both space and time - needing a second longer to get into an elevator or off a subway. Needing space in a restaurant - a bother. Needing space on a subway car - a hindrance. Needing space on a sidewalk - why do you people go out?

No where to belong.

And now I have another secret. I fight and fight and fight to keep silent about my own complicity in my own oppression - I believe they are all right. I believe that I am too big, too bulky, took different and that I should be grateful for what I'm given. I don't believe I've earned anything, I believe that those who are kind to me are simply charitable. I believe I am not worth of that charity.

And then.

I found a slow rage building in me. A rage that surprised me. I didn't know it's source. But it would burst out every now and then. I'd snap at anyone who did something that reminded me of the cruelty of the boys at school or said something that bit like the girls at school. I'd find myself feeling like a little angry boy who had been a little angry boy for a very long time.

Oh, I managed to create a safe space around me. In my home, in Joe's company, in the life we built together. But even there, even in those places, I wasn't entirely safe from me. From the blame I heaped on myself. From the apology always on my lips about taking space and time and help.

On February 1st, I started a new way of living in the world. I wanted to do things to ease the pain I felt every day of my life. I started lifting weights and controlling my blood sugar. Simple things. Private things. But then the private became public. I stopped allowing Joe to push me. I pushed myself down hallways and on to buses. I pushed myself from the car to the hotel lobby. I pushed myself from the movie theatre to the restaurant.

The reaction to this wasn't pretty. I'm slower. I take longer. Hills are a challenge and I slowly push up them. Ramps are even more of a challenge and I'm even slower. But I determinedly make my way. I am going to be stronger and I'm going to be as pain free as I want. I came to realize that if I wanted to stop feeling the pain in my body I was going to have to deal with the pain inflicted by impatient people who simply want me out of the way.

Now let me define out of the way. Wheelchair users in general, and fat ones more specifically, are like rolling Rorschach tests. People see what they want to see. People see what they fear or what they loathe or what makes them angry. I am not human. I am not real. I am simply something in their world that they get to interpret in any way they want. I can be rolling towards a door, there can be space all around me for people to easily pass, and people will get behind me and 'be' inconvenienced. There can be a mile of space all around me and people will follow me and complain about me slowing them down. There can be another door to go through but they will wait as I push myself through the disabled automatic door. People want me to know the results of their Rorschach, an aptly named test because it sounds like a combination of 'roar' and 'shock' which is how I'm responded to most often.

A few days ago, in California, I am pushing myself up a hill on the way to the hotel we are staying in. Joe is getting things from the car. He knows I prefer to do this now myself. Even if it's hard, I want to get up the incline myself. Two people get behind me. I look around. There is so much space to walk around me and get to the door.

I realize that they want me to feel in the way.

I realize that is the message they want to send me.

I realize that none of this is an accident.

I realize that this is prejudice made flesh.

I realize that they want to define who belongs and who doesn't.

I realize that they want me to know that I don't fit.

That little boy in me, the one with the secret, the one with secrets, the one who knows he doesn't fit.

That boy spoke to them. The voice was a man's voice but it was a voice that had never spoken before.

"I HAVE A RIGHT TO THIS SPACE!"

They look shocked.

I told them to go around me. One of them said that I should either hurry up or get help. I raged, "THIS SPACE IS MINE, I BELONG RIGHT HERE."

The tone startled them and they stepped to the side and walked into the hotel. I pushed myself on my path.

It's my path.

It's mine.

And I have a right to be here.

That little boy was wrong. I do fit in this world. I do have a place in this world. It's simply been waiting for me to claim it.

And I claim it.

Fully.

I belong.

This is the lesson that it took 63 years for me to learn.

Getting Ready for Tomorrow

Disability, in the minds of many, is an experience to be learned from, either as directly experienced or though second-hand experience as a parent or a care provider. "I've learned so much about life from having a disability." "My clients have taught me more than I have ever taught them." Haberdash and bullshit! If you are paying attention you learn from living the life you are given. And, no other group has to suffer through, "I learn so much from you," like the disabled. "I just learn so much just from being around women." "Gay people have taught me more than I have ever taught them." Bletch.

I say all this because I keep getting asked the question, "What are the most important lessons you've learned since becoming disabled?" Well, yeah, I have learned stuff, I mean 10 years have passed, you'd think I'd pick something up over that time, disabled or not, right? Have I learned things that are lessons from 'disability' ... I don't know. I've learned stuff from how people regard disability and about how discrimination lives in houses with only one step. I've learned that ...

Disability simply is.

It just is.

It isn't a classroom where your heart gets to grow simply because you assisted someone to do something. It wasn't created, like Dickens created Tim, as a lesson for others to consider how lucky they are.

So, I'm going to answer a question I was asked yesterday, tomorrow. That question was, "What's the most important thing you've learned from having a disability." But I'm going to change the question to ... "What's the most important thing you've learned in your life and did disability have anything to do with it?"

Today's post was simply to state that I don't like disability as an object lesson for the non-disabled to help the nondisabled self actualize. And I don't like the idea that disability is an experience from which one is supposed to learn special lessons to make you an extra special person. Both ideas make me shudder.

But I do want to answer that question ... tomorrow.

Ashes

I thought about ashes.

I tore the envelope open and ashes flew out. I was startled and stunned. Looking in the envelope for explanation I found amongst the ashes bits of paper that had not been consumed by flames, looking at it, I saw that it was from my book, "I Contact: Sexuality and People With Intellectual Disabilities." Gradually I realized that these were the ashes of my book, burnt.

I found taped to the outside, behind the address label a short letter telling me that I was a disgusting pervert, that I was sullying the innocence of the innocent and that I had no business working with people with disabilities, "God's Forever Children." I still remember that phrase.

Over the years similar things would happen to me. I have been called both the agent of Satan and a purveyor of pornography. And why? Because I believed that people with intellectual disabilities had the right to love and be loved, to fall head over heals for another person, to experience sexual intimacy. Things I still believe.

But, yesterday, I thought about the ashes and how they stained my fingers.

I was coming back from picking up lottery tickets, everyone in human services has to have a retirement plan, and zipping by a gathering spot under the escalators in a mall near my home. There are lots of places for people to sit, to talk, to eat, to have coffee. It's often full and I often see a man with Down Syndrome, of about 30, sitting there. Always alone. Sometimes having a sandwich. Sometimes a coffee. Sometimes just sitting, quietly, watching the world.

We met once before, when he was surrounded by bullies on the street. I intruded into their harassment of him and, as cowards do, they fled. We have a nodding acquaintance. Sometimes we speak, but not often. We are simply fellow disabled people that share a community together. I believe he would watch out for me, and I know he know I would for him.

But.

He's always alone.

But yesterday, it was different. He wasn't alone. He was sitting with a woman, who also had Down Syndrome, and they were talking over coffee. I smiled. I was pleased to see that he had friends in the area, I've never seen him but alone.

And then. She kissed him.

His arms went around her shoulders, and they held on for a few seconds.

"He loves her," I thought to myself, followed immediately by, "and she loves him."

They love each other.

The enormity of that still overwhelms me. Here they are two people with intellectual disabilities out together in the community. Out together as a couple. In love. This shouldn't be surprising. This shouldn't take my breath away, but it does.

Because I can feel the ashes, still, as if it was yesterday. I can feel them soil my fingers, pages that expressed a believe in love, burnt, spilling on the floor, puddling like the blood of prejudice around my feet.

And it is yesterday.

In many places.

For many people with intellectual disabilities.

And it shouldn't be.

She kissed him. He loves her. What's to fear in that?

The Magnificent 8

Probably no one saw him. He was only there for the briefest of seconds. But it mattered to me that he was there and it mattered even more what he was doing. It was in one of the bigger scenes in "The Magnificent 7" which opened this weekend in Toronto. After our travels to the States we had little energy for much but we both wanted to see the movie so we managed to organize ourselves to get there on time.

I had read about how diverse the casting was, and it was. They managed to actually hire Native American actors to play Native American roles. That's how diverse it was. It was actually fun to watch the interplay of the actors in their roles, with their ethnicities adding to the plot and the play. There wasn't an overtly gay character in the piece but there was certainly a couple of men whose relationship was overtly undefined and whose bonding was very deep, so one could at least speculate.

All that diversity up on the screen.

And then, for an instant.

Just for an instant.

A man in a wheelchair, sitting on a porch.

I was startled so much I almost fell out of my wheelchair. I don't expect to see disabled people in movies, in backgrounds, in crowds, let alone in leading roles. Now I have no idea if the actor playing this role had a disability, I somehow doubt it, I mean diverse casting doesn't actually mean us, does it?

But leaving that aside, let's look at what was happening in that second. He was having dinner and he was being helped to eat. I couldn't see him clearly enough but I think he was an elderly man in a wheelchair. But he was being helped to eat, sitting on the porch, in plain view.

This was set in a town with limited resources. With starving people. With people struggling just to get by and survive. The whole premise was that they, as a townspeople, were being oppressed into poverty by a robber baron from whom they needed rescuing. So in a place where starvation and deprivation ran rampant, a disabled man was having dinner on a porch.

Remember those kind of math questions that Nazi's used, some of which have made it to North American textbooks? The 'who would you throw out of the boat first' questions? The questions that asked who should be the first to die during times of shortage and desperate survival? Remember those?

This is the kind of math that's being done now, in subtle ways, about disabled lives. The idea of burden and cost are back with a vengeance. Disabled people fight just to be a part of the discussion about disabled lives. That's where we are now.

So in these times it was comforting to watch a scene that indicated in 'those' times, disabled people weren't hidden away, weren't confined to the captivity of indifference.

He was on the porch.

Eating.

Being lovingly assisted.

He was home. In his community. Sharing what resources they had.

I wonder if some film maker will ever think to zoom the camera in and really see this man the way that I did. And I wonder if they realize that there is a story to tell there. An important story. Because he must have meant something to someone, he must have been loved by the town, he must have a story worth telling.

Van Go

Joe and I are back from our trip to California. We had a good trip and met receptive audiences and wonderful hosts. But, let's be clear, these are not vacations. We lectured and travelled and then lectured and travelled right through the week. The one day off in the week was spent primarily in the car getting from one part of the state to the other. Both of us, when we got on the plane, commented on the fact that as 'old boys' we're doing OK. We can still do these kind of gruelling schedules and even enjoy them!

But, that's off topic. Yes, we can still do them. But as we travelled we began to talk about an upcoming trip of several days. This time we're going to be on the eastern seaboard so we typically rent a wheelchair van and take the power chair. As we discussed the upcoming trip and realized that on this particular trip, I didn't miss having the power chair. Not once really.

Typically having the powerchair is better for me, because I have more access and for Joe because he has less work to do, what with not having to push me around. However, this trip Joe pushed me only once or twice and only for a few feet each time. I've got much more strength in my push and I have increased my endurance significantly. Our conversation about the next trip really centred on how much the wheelchair van costs versus a car and if the expense was still worth the benefit that we got from the powerchair.

In the end we decided to give it a go without the powerchair, that I'd simply rely on my own strength for the trip. We noted that there are some things I will not be able to do and that we'd have to use the car a little more than we would otherwise, but that we'd try it and see how it went.

So we landed last night and we were tired. I got up this morning to discover our Internet was down and that I couldn't access the YouTube trainers that I use for weight training. It was the perfect excuse. Then I thought about the upcoming trip. I dug out an old exercise program, 'wheelchair aerobics' and put that in the DVD player and did that for about half an hour. It wasn't the same as the training but it was something.

The interesting thing about this whole journey of getting stronger, has been the questions I don't get and the question I get all the time. I am constantly asked if I've lost weight. I'm never asked about the distance I can push myself or about my ability to push uphill, or about my skill at getting through doors. I've been asked why I haven't written about my 'diet' and my 'weightloss' program. Well, here it is, my goal has been to get stronger. My goal has been to increase my independence when using the manual chair. That's what I'm doing.

That's what I'm happy about.

Well, except in the morning when the weights stare at me, the cheese danish call out to me, in lightly accented English, and lethargy pulls me to the big comfy chair in the front room, then, I'm not so incredibly eager.

Working on Nice

I made my mind up instantly.

I didn't like him.

On our flight back from San Francisco the plane was jammed full. In our row I had the aisle, Joe the middle and a fellow a few years younger than us had the window. We had preboarded so we got up and let him in. He sat down and immediately, as if the windows aren't shared by everyone in the row, pulled the window shades down. Now, I fly a lot and though I'm no longer a nervous flyer, I do find that being able to look out the window during take off and landing quite comforting. I leaned forward and asked the fellow, politely, if it would be OK with him to have the windows open during those times. I explained briefly that it settles my nerves. He smiled, grimly, and said that flying didn't bother him at all and that yes, he'd put the windows up.

Then, he did. He pushed them up. I thanked him and then went about waiting for the plane to take off. When he thought I wasn't looking he pulled the windows back down. The decision was made. 'What an asshat.' And that was that. Joe and I glanced at each other, then settled in for the plane to be loaded and then begin the journey home.

We got in position for take off, the engines revved and the flight attendants were asked to take their places for take off. Then, quickly, the window shades shot back up. I was able to look out the window, see us take off over the bay, watch as we banked over the city and head home. He'd done what I asked, the shades went back down.

I was in conflict. I had decided that he was an 'asshat', I was comfortable with that. I even, I hate admitting it, enjoyed it a bit, thinking how much different I would have been if the request had been made of me. I was NICER. I knew that. Then he did exactly what I asked him to do. I was really reluctant to upgrade my opinion of him.

Then, tired of thinking about it, I got my book and began to read. Lord John Grey and his complicated relationship with Jamie Frasier distracted me for much of the rest of the flight. That and getting something to eat and buying duty free also added to my distractions.

We were nearing Toronto, the plane's engines slowed down and the flight attendants were making their final pass through the plane. The windows, which had been closed for the flight, went back up. He'd actually remembered my request and complied with it.

But I had decided what I thought of him.

I had decided that he was a jerk.

Unmaking that decision would take a lot of work. It was easier just to go on thinking poorly of him. I mean it was easy to do. He closed the window shades without any consultation with us, He only opened them on request for very specific times. He acted as if he was giving up a gift by doing what was requested of him. See ... it's EASY to come up with reasons to justify thinking badly of someone you don't even know.

All I knew was that I was NICER that him and would have been NICER from the start.

Now getting out of the plane would take coordination. I'd have to get up, back up and let Joe out who could go forward and then our fellow passenger would get out passing by me, and then I could sit back down in my seat. I had to wait for my chair to come back up. I asked Joe to explain to him what was going to happen. He listened, nodded, and said that it wasn't a problem.

The exit strategy worked and as I sat down in my seat he wished me a pleasant evening. I wished him one too.

Seems he was a decent chap all along.

Thank heavens he had no idea the mental work that went on in my head to finally come to the conclusion that he wasn't so bad after all. You see that's what nice guys do!

See.

I'm nice!

A Day With Ed

Image description: The Red Ramp at the Ed Roberts Campus, which descends from the second to the first floor in a large spiral and seems to hang from the ceiling with white thread.

It's affected me much more deeply than I thought it would. Indeed, I never really thought about the emotional aspects of being in any physical space before. Yesterday I had the honour to do a day long presentation in the Ed Roberts Campus in Berkeley. I of course know who Ed Roberts was and of the work that he did and the fights that he fought. From the moment I knew that this was one of the venues, I looked forward to simply being there. I'd never been in a building that was named after a leader and advocate with a disability who fought for social justice issues regarding disability. So, cool. Very cool. I arrived with anticipation.

The first several minutes were simply about getting in, meeting our host (Hi, Marc) and getting set up. Only then did I get a chance to roll around and begin to experience being in the place. A place of fully intentional accessibility. A place where welcome was built into the building's DNA. It was astonishing. I went to the bathroom there and was able to operate the doors easily with a push of my foot pedal, I didn't have to negotiate to get in to the exact position necessary to push the button with my hand.

Throughout the place I found rollable floors, wide doors, easily accessed elevators, and one marvelous and absolutely beautiful ramp. The ramp, which comes down from the second floor to the first is a thing of beauty, a work of art. I waited until lunch time and headed out to go down it. Joe was coming with me but was called back to the book table. I should have waited but couldn't. I rode up the elevator, pushed over to the ramp and down I came. It was exhilarating!

I had to bring Joe with me so, I did it again. It wasn't as much fun for him walking down it as it was for me sailing down it and letting my chair pick up exactly the amount of speed where safety and 'shit this is dangerous' met. It was wonderful.

We left the building after the day was over and rode to our hotel.

Now, our hotel has an accessible room.

It meets our needs.

But my definition of accessibility has changed, been broadened.

This room I'm in, it's been adapted for me. Non disabled people are used to places that were built for them, not adapted for them. There is a difference. I didn't know that before, but I do now.

I'd been in a place that was built for me. And the marvelous thing is, it was built for you too. Disabled or not, it's a building that makes it easy to be in, to accomplish what you want to accomplish, that is thoughtful in it's design for everyone.

It's going to be difficult moving away from that day in time and in memory. It's going to be difficult being in places and seeing what could have been and knowing that it's simply not there.

There is intentional welcome and intentional accessibility. I've always known that.

But the flip side is, of course that there's another kind of intentionality, the kind that simply doesn't think that everyone matters in quite the same way.