Sunday, January 31, 2010

Davey Versus Goliath

I thought I'd update you all on my fight with the Royal Canadian Mint. I know I fight a losing battle, but sometimes that makes a battle more noble, don't you think? To remind you:

I went to the mint to see what kind of collectible coins they had regarding the Paralymics which will be in Vancouver next month. I found that they only had collectible coins, in the amount of 25$ for the regular Olympics. I shot off an inquiry letter asking if they were going to produce a similar coin for the Paralympics. The mint wrote back saying that, no, they weren't putting out a collectible coin but that had put out a couple and would put out a couple more circulation coins in the amount of 25 cents. The letter was full of self congratulations for being the first mint to acknowledge the Paralympics with a coin.

I then wrote to someone in public relations in the mint saying that I was shocked, appalled and offended that they had minted coins for the two Olympics that had such disparate values. I noted that they managed to make it mathematically possible to calculate exactly the degree of discrimination between able bodied athletes and athletes with disabilities. For those of you who don't do math ... 25 dollars versus 25 cents points to a valuing abled bodied athletes 100 times more, how's that for discrimination. I asked for both an explanation and for redress - simply, mint a coin of the same value for the Paralympics.

A long time passed after writing them the letter. And it truth, I was thinking, 'Dave, you've made your point, now let it go.' Then I got the letter back and I was incensed. One line in particular got me:

"But while the Olympic 25-cent circulation coins are intended for a uniquely Canadian
audience, the 25-dollar silver coins have been aimed at a much larger,
international market."

Oh, really? And they think that the Paralympics are a couple of guys in wheelchairs from Wawa? I couldn't believe that she missed the entire point of my letter and then went on to insult the Paralympics as games that are not of international interest. I decided then and there the fight was not over. That I would make as much noise as it is possible for one person to make.

I have since written to the Minister in charge of the mint, explaining that Canadians with disabilities still face prejudice in almost every aspect of living, from housing, to employment, to grocery shopping. That Canadian's with disabilities understand what it is to be devalued and now the mint, under her jurisdiction has demonstrated that One Able Bodied Athlete is equal to 100 Athletes with Disabilities. Well, thanks very much but, forgive the pun, we won't stand for that.

I got the standard letter back ... thanking me for my opinion and promising that the Minister would look into it.

I've pitched the story to the news media. It landed with a clunk. But it's difficult to get people interested in covering a prejudice that, in all probability, they have!

But something odd happened. I was on an elevator telling a friend about the issue. It doesn't take long to explain and it isn't hard to get. When we got to the ground floor and got out, a fellow on the ride with us, I didn't much notice him as he was behind my chair, said, 'That's just wrong. Good for you for complaining.'

This guy was a walkee talkee and he got it in only a couple seconds of explaining. As I think most reasonable people do.

But reasonable people don't run the country.

And that's the tragedy.

I'll update you on the battle as it continues.

Saturday, January 30, 2010

Id-tastic

We often, when working with offenders, or with people who need to make a radical shift in both thinking and behaviours, encourage people to think of 'old me' and 'new me'. Old me thinking leads to relapse, jail and other horrid social consequences. New me thinking is difficult but it leads to decisions that are healthy, constructive and keep feet on the path of development.

And then there's the Id. I remember learning about the Id, Ego and Super-Ego when studying Freud in Psychology class back in the day. Even though I thought the whole Freudian mish mash was over convoluted and a tad warped, I really got the idea of the Id. The 'me out of control', the 'me that fulfills all my needs irrespective of others', the 'me that voraciously attacks food, sex, life'. AAAAAARRRRRRRGGGGGG ME MAN!!

Well, unexpectedly, yesterday. I was taken over by 'old me' who rode into town on my Id. I lost all self control. Even thought I was in a group, I don't think anyone really noticed. It was a pot luck lunch. We'd had a brilliant presentation from two of the team! Go Yvonne and Amanda. I don't think I've been that moved by a presentation in a very long time. It was the kind of talk that lifted your spirits and made you believe that kindness can win the day. Amazing.

Anyhow. A N Y H O W. The table was bursting with food. I made a joke after all the questions had been asked and the presentation well and truly finished, I said, 'The biggest question is, of course, why is that box of pastries just sitting on the table, why aren't we snacking.' Seconds later the pastries went around the table. Seconds after that, the whole group erupted and attacked the food that was brought in. Katie beside me had chocolate cake as her first course. But then salads and bruschettas and apple with caramel dip and chips and guacamole, not to mention the baked brie, oh my heaven's the baked brie. This is a group that cooks.

I had the agenda in front of me and we kept on track and covered the entire thing. Those who came by and looked in might have seen this huge family having dinner and talking together. Even though we talked of difficult things and struggled with reoccurring problems, the food never stopped and the ideas became increasingly creative. It was wonderful.

But into the camp, stole, Id. Old me sitting on Id's back whispered to me, 'Screw diabetes, there's cake. CAKE. I resisted and instead took some apple slices and scooped up caramel dip with chocolate topping. See APPLES, I said to Old me. I saw Id whisper to OM and then OM said, 'Look there's fresh raspberries on the chocolate cake, how healthy is that. Raspberries are chock full of fiber. One, then two, pieces of chocolate cake flew on to my plate. Followed by baked brie, followed by more apples .... AAAAARRRRRRGGGGGGGHHHHHH.

The meeting was almost over, I had to say something to Alan and when I did I could hear the sugar vibrating in my system. I knew that I was in desperate need of some insulin and managed to give myself a shot, like a junkie in a toilet.

Man, complete loss of control. Complete. I haven't had that kind of relapse since the diagnosis of diabetes. I mean, recognize, I am diabetic for a reason. I think that after elevators, sugar is God's most wondrous invention. So it's really hard for me to be in control all the time, but I try to be ... now I'm whining ... New me knows there's a new way of living, but sometimes New me seems like a shriveled up school marm waving her finger at me for being a bad boy.

And I was a bad boy.

A really bad boy.

Since it's Saturday, maybe a spanking is due.

Oh, God, he's back.

Friday, January 29, 2010

Collapse

This afternoon we stopped for tea in a small indoor foodcourt. Just as we picked a table where I could pull the chair in, there was a loud crash followed by someone screaming, 'Oh my God, someone call security!!!' Then people were gathering around a table just a bit away from us.

'Did you see anything?' Joe asked.

'No,' I said.

A few minutes later people were being shooed away by a phalanx of security officers. Most people left but there were two diehards that refused to leave the spectacle of someone else's misfortune. With others gone I saw that a man was laying on the floor half under a table. He was about thirty, the same age as the security guard guy who was the one in charge.

The guy on the floor was uncomfortable so the guard folded up his jacket and made a pillow for the other man's head. He spoke to him quietly. 'I know I'm in a uniform, but don't be afraid. I am not a police officer, I am a security guard, you are not in trouble, I just want to help you. Can you tell me what happened?' One of the hangers on who would not leave called out, 'He looked like he was having a seizure.'

The guard did not address the woman who spoke, he didn't break gaze, 'Don't tell me what you are hearing from others, just use your own words to tell me what happened.' I heard the fellow speaking softly but I couldn't hear what he was saying. The woman who had called out actually yelled out, 'Tell him to speak up, I can't hear him.' Finally, two of the other guards got her to move, she was extremely upset but she had no choice and she finally left.

Soon it was just two security guards and the guy on the floor. With some assistance he got up, he said that he hadn't eaten for a bit and he thinks he may have just passed out. The fellow working the Woks at the Chinese place called out, 'Chicken or Beef, I'll whip you something up quick. No charge.' Food was made, food was eaten, colour came back into his face. 'Are you sure you don't want us to call an ambulance the guard asked for the fourth or fifth time. The fellow said, 'No' he was feeling better. The guard walked him to the door, chatting, with him ensuring he was ok.

I'm composing a message to that food court. I have decided that if I'm going to collapse anywhere, it'll be there. Kindness followed kindness, those in uniforms seemed to see the uniform as giving responsibility, not power. The guy at the restaurant understood that food was a commodity but sometimes it was also medicine.

Oh our way out we saw the fellow standing waiting for a streetcar. I smiled and asked if he was, 'OK.' He said he still felt shaky but he was going home and he'd be ok. 'Good,' I said, 'Take care of yourself.'

He nodded and with the strength given him from a stir fry and a gentle hand, got on the streetcar.

Thursday, January 28, 2010

Manly Man

He is about 31, young enough to still be young, old enough not to be icky, and he's handsome. Not cute. Not pretty. Not attractive. Handsome. Cinema handsome. Gladiator handsome. What with the strong jawline. The brilliant smile. Shoulders upon which you could set the weight of the world. He lives in the same building as I do and I run into him every now and then.

He always says 'Hello' to me and is very pleasant. He and I have chatted about jobs and stuff, friendly neighbourly stuff. Nothing personal, nothing more than the kind of thing you tell strangers who are not likely to become friends. He often rides his bike, which probably accounts for the strong, muscular thighs and the pert round ... anyways, I've joked with him about the fact that both of us get around on wheels. He thought that was really funny and he laughed a loud, deep, manly laugh.

So many men these days seem to really be in to grooming. So much so that they look too perfect, too ... I don't know ... moisturized. This guy looks great running his fingers through his hair and shaving the scruff off his face. He has the clean smell of soap. His clothes look good on him but don't look like he's spent huge amounts of time choosing them. You know the kind that takes forever to find. He'd look good on a ranch, in a bar, in a boardroom - in jeans.

We just ran into him moments ago, just before coming upstairs. He greeted us with warm tones. Joe said to me, once we got into the elevator, 'You know when I run into him when you aren't with me, he won't even acknowledge me. I've watched him, he snubs almost everyone in the building but you. Don't you think that his friendliness is discriminatory treatment probably based in some kind of prejudice about people with disabilities?"

I said, "Yeah, and in this case ... I don't give a rat's ass."

Wednesday, January 27, 2010

Crab Apples

It's been bugging me since I first saw it. It hangs on a wall just outside a grocery store where I sometimes shop. It's one of those typical hospital fundraising posters, meant to push the 'charity' button in our hearts. I've seen it for weeks without seeing it. But the other day I was standing by it, waiting for Joe to go pee, and I looked at it.

Here's what I saw: A young woman is struggling to walk, holding on to balance bars as she, with sheer determination, takes one step after another. Around her are helpful smiling professionals willing her on. Above her is the caption, 'Because she's somebody's daughter.' Have you ever had the experience of seeing something, being bothered by it and yet not knowing why.

At first I thought it was because of the stereotypical picture of the gimp struggling to walk, heroically conquering disability, rising out of the confines of a wheelchair and back into real life. I understand that there are hundreds of different things done in rehab, yet, this is the only picture one has of the process. There is a kind of message here about the 'courage' it takes to reach 'beyond the chair' and into 'a life of real value'.

Yeah, yeah, yeah, that's all true, but it's not the reason why the image bugged me. I didn't know why.

Today, sitting on the bus for an hour and a half, I saw the poster again, and I read the words as we drove by. Then I realized it wasn't the image that bothered me, it was the sentiment written above.

Because she's somebody's daughter.

WTF!!

How about a more appropriate slogan.

Because she's somebody.

It was the borrowing of the parents value to add to her's in order to make an appeal for money that bothered me. Like she doesn't have enough value of her own. Like without them, who gives a shit about a crip like her. Why waste the taxpayer's money - ? But this get's the taxpayer to relate to the parents in order to feel for her. Pity by proxy.

Let me say this - people with disabilities have value all on their own. I do not have value because Joe loves me, Joe loves me because I have value. I do not increase in worth the closer I am to dear ol mom and dad. I have worth all on my own. Maybe not as much as the hospital thinks I do, but I do.

But maybe I'm feeling this way because I had crab apple soup for dinner?

What do you think?

Tuesday, January 26, 2010

Tweet Tweet

So, it's four o'clock in the morning and I'm awake. I often get up early, enjoying the quiet of the morning. But today I want to sleep but can't. I get up and pad down the hallway to the computer. My house wheelchair waits for me, my housecoat draped over it, I shrug it on and snuggle into my chair.

My view, out the window over the computer, is of condos, a sterile looking building in which no one ever seems to be home. In the early morning like this there are no lights on, which makes the darkness thicker. If anyone looked out from their window there, they'd see me here in the faint glow of the computer.

The only other light on in the room is the yellow light indicating that my power wheelchair is still charging. The charger sits atop the liquor cabinet and the white cord snakes down and then couples into the slot underneath the hand controls. I still haven't decided if I'm riding the power chair to work today or if I'm going in my manuel. I'm worried because there are some small spaces to negotiate to get up and into the office.

Checking my email, there are a couple short notes from friends, one request for me to move 5 million dollars out of Africa and into the hands of the needy, and one email from a woman named Bunny who sent me her picture. She looks ... swollen. I save the notes from friends and decide to forgo the 5 million dollars and Bunny's charms.

Now it's time to write my blog. I tried last night but nothing came. I was too full of the book club, but that's over and I feel like I have to have something new. I sat with the empty 'compose' box in front of me and watch the last half of Jeopardy rather than write anything. I open the compose box again and realize that I still don't have anything much to write about.

So, I decided just to twitter away my morning. Now I've never received a tweet. Don't really know what twitter is. But I understand it's just writing exactly what's happening now.

Hmmm.

I think I'll go back to bed.

Monday, January 25, 2010

The Lottery: A Guest Post by Patricia Wood



Today is an exciting day for me. I get to discuss a book here on the blog and this afternoon at work. I love a good book and I love discussing books. I've already had a few brief discussions with others either through email or with those who've popped into my office and it seems the The Lottery is the perfect fodder for discussion. I was thrilled when Patrica Wood, the books author agreed to write something for the club. This is the second time we've been joined by a book's author, it adds so much to the enjoyment of the day and the discussion.

A note about the following post. Patricia sent me this via email and when I cut and pasted it into my blog, it lost all formatting. As much as I tried, I simply couldn't keep it. So I've 'paragraphed' it according to my reading of it. I apologize now to Patricia if I inadvertently shifted meaning in any way. I apologize to my readers for not having better computer skills. However, acknowledging errors as my own - here's what Patricia had to say ...

ANSWERING YOUR CRITICS OR I DON’T HAVE TO EXPLAIN MYSELF DO I?

Lottery has been out 2 ½ years. I’m still amazed at the reactions I get. Everything from “Gee, it was a fun ‘beach read.’” To “I’m making it required reading for my classroom to address the issue of empathy.” Or even “I’m using it for a door-stop or for propping up the short leg on my kitchen table.” And finally. “Why’d you use so many F-words?”

As for me? I like the idea that my novel engenders empathy and compassion.EMPATHY: Understanding another’s feelings. Compassion.COMPASSION: Concern. Kindness. Consideration.This is different than tolerance which implies a sort of hierarchy i.e. I will go out of my way to be superficially nice to you because I’m so much better than you… Although I was a classroom teacher and focused on disability and diversity in my PhD work, my primary goal (if I’m to be utterly honest) was to tell a compelling story that resonated with readers.

There’s a negotiation which takes place between a reader and an author: Authors bring their creation to fruition using their life experiences and you as a reader bring your life experiences into the mix when you read.No reader will get the same message when they read the same book. No one gets the same meaning from a particular collection of words. Everyone’s interpretation will be slightly different.My premise was to see if I could convince a reader that Perry L. Crandall exists. That he is real. That he is a living, breathing human being. That you are all, in fact, reading his story from his own particular and unique point of view.

It’s very hard not to bristle up like a mother hen when work you are passionate about is criticized. It’s like someone telling you your child has flaws. Yet, there should always be room for debate about an author’s intent and whether or not that author is successful in achieving that intent. There are times when someone says LOTTERY is exactly like Forest Gump and I have to shake my head. We are willing to accept myriad stories about some single 30-something woman in New York City looking for a husband and wearing Jimmy Choos, yet we seem not to appreciate the nuances of characters who define themselves as slow. We have difficulty appreciating that there are many portrayals of those who have mental challenges that do not have to be either Lenny in Of Mice and Men or the savant in Forest Gump. They can be subtle variations of either.

The self-identification of slowness is not unique to Forest Gump or even my character Perry. My students who had cognitive challenges or who were described by those-who-find-a-need-to-label as developmentally disabled, all preferred to call themselves slow, rather than embrace the more brutal and limiting terms that society tends to use.We all go at our own speed. And maybe speed is how we should see things. We all arrive at the same destination, just at different times.

I take pride in foiling those-who-find-a-need-to-label by not giving Perry any descriptor such as Down syndrome or autism or learning disabilities? Would it allow you understand him better?I think not.But I can call Perry an optimist like many of my students were. Like I am.Do I berate myself because I can’t be a nuclear physicist or run an Olympic marathon? No of course not. But I can watch Discovery Channel and be amazed at scientific breakthroughs or jog for exercise and dream I'm heading towards a finish line while I do so.

My students didn’t sit around my classroom bemoaning the fact they couldn’t do something. They celebrated and enjoyed the things that they could.Is LOTTERY flawed?For some readers maybe, for others, no.Does it do what I set out to accomplish?For some readers yes, for others no.Will everyone appreciate LOTTERY?No, but then I didn’t expect everyone to. No book resonates with all readers.When I imbued Perry with honesty, made him naive, gave him wants, needs and sexual desires, made him a little bit single-minded and self-centered, I also gave him a generous spirit. I made him at times conflicted and confused and supremely happy, just as we all have been at some point in our lives. I had him grieving for those he lost and appreciating those who were his friends.When I did these things, I did them with the expectation readers could find a commonality between themselves and Perry.Because when we recognize how very much alike we all are, even though we use a wheelchair, or a guide dog, or require assistance or adaption in some way, to navigate life, when we are able to celebrate our differences, it is then we start to really value our fellow human beings.

I know how Perry L. Crandall would respond to this possibility.He’d say, “That would be so totally cool!”This is true.This is echt.

Sunday, January 24, 2010

Wanting To Touch My Touch

Well, it began as a good day. I received an email of such immense kindness, from a wonderfully unexpected source, that my morning was brightened. I'd slept poorly and had sat down at the computer groggily considering the day. Then a little ray of sunshine enters my life. How wonderful. How quickly the fog of the evening left me. I was ready to face the day.

Then Joe and I headed down to get my new electronic calender, an 'Itouch', at a store that is completely accessible. We stopped to catch a flick along the way, The Last Station. Now that's how to make a movie. Have, plot, performances, pacing and powerful scripting. The only special effect was the writing. Helen Mirren and Christopher Plummer were given the opportunity to actually ... act. Wow.

On our way home, after lunch and grocery shopping, Joe went into the LCBO to pick up a couple of beer and I waited for him at the corner. I managed to get off a great line, something that always pleases me no end. A young couple came out of the store, he carrying two bottles of wine, she carrying a plastic container with a huge chocolate cake. As I sat watching for Joe to come out of the store with his beer, they caught my eye and we all smiled. As they neared I glance from wine to cake and said, 'For the first time in years I could be talked into a threesome.' We all laughed. Them harder than me. It was nice.

The day deteriorated upon arrival home. We excitedly got the Itouch out of my wheelchair bag and tried opening it. Well, not exactly true ... we tried to figure out how the plastic box opened. We had no idea. We tried the obvious, pulling at the top, it didn't work. After almost giving up I got Joe to search on YouTube for 'how to open an Itouch' and they showed clip after clip of people taking the thing apart. Shit, we wanted to just get it out of the box!!

We looked at each other, realized we'd have to go back down to the store and say, like Ruby does when she hands us an orange, 'open'.

We are so old that we can't open packages. We've got the strength we just don't have a clue.

I think we should just give up, admit we grew up when kids talked to each other through two cans attached by a string.

It may have been low tech, but at least we knew how to open the freaking cans.

Saturday, January 23, 2010

And Maybe A Boa

Well, tickle me with a pink feather!

A couple days ago I announced that it's time for disability bloggers to take over Valentine's Day with posts about sex, sexuality, and sensuality. We need to reclaim love, lust and licentious behaviour. Only a few people signed up but I'm hoping more will take on the challenge. It's only one day in the year and it's an important day.

Though not disabled as a child in the traditional sense of the word, I was 'handicapped' by the fact that I was an ungainly, ungracious, unattractive little fellow. Valentine's Day was a painful experience. We were all forced to make Valentine's boxes or envelopes to put on our desks in anticipation of the wonderful Valentines that would flow our way on the special day. After the first spectacularly painful year of recieiving not one card - I was always sure to make myself several so I was saved the embarassment of total rejection.

When I began working in the area of sexuality for those with intellectual disabilities I sensed the same experience of the nearly total rejection of the idea of a life of love and sex for those in my care. There were policies, procedures and protocols that, more than dismissed the idea of sexuality, punished it's appearance. It's been a long hard fight and there have been many voices of radical reason and ground has been gained.

In talking with others who have physical disabilities like myself now, there is often heard, when the subject of sexuality is raised, the frustration of being seen as sexless. There is a courage in coming out as sexual, as demanding to be seen as fully human with fully human needs. Therefore, we need to talk about it.

So, I announced, another day of Valentine's blogging. (There's lots of time to sign up, just do so in the comment section). But here's the pink feather moment. I got an email from a guy named Drew who runs a sex store and has a web site that sells sex toys. He read my blog and wrote to ask if he could in some way help sponser the day. He liked the idea of sexuality and disability being raised and wanted to be part of it. Well I checked out his website and there's lots of cool (hot) stuff but there was little information regarding sex toys and disability.

I wrote Drew back and thanked him and pointed out that the website didn't such information. He wrote back wondering what would be needed to make the site more accessible. I realized, I don't really know. So I called and we talked. I asked him if I could could post the link to his site at Eden Fantasys for you all to take a look at. You can forward feedback to me and I'll collect it and send it on to him.

What was great in talking to Drew was that he realized, instantly, that people with disabilities are often not included in the discussion of sexuality and that he wanted to do something about it. I like this kind of corporate responsibility and interest. So, have some fun today. Go visit Drew's site. Maybe buy a pink feather.

Friday, January 22, 2010

Dave's Little Protest

I have decided to become more effective and organized at work. I know there are times my confusion about where I am and when I'm working gets in the way. Well, I've figured out how to take care of that. I'm going to buy a fancy electronic calender. It's small enough not to be a burden in my wheelchair bag and it's easy enough to use. This way I'll never have to say, 'I need to contact my home office to find out ...' I know, I know, I should have done this a long time ago but, well, I haven't.

So, after checking into a hotel earlier this week, Ted our GPS, told us that there was a computer and gadget store near by. We went to the store and it was in one of those outdoor malls with all the big box stores. We went to find disabled parking and there wasn't any. This doesn't mean that they had a bunch and they were all full. They had none, nada. There were blue bays two stores over on the left and one store over on the right. But these were all very far away. So we wedged in to a spot. Luckily we were in the VW Beetle and we unload the wheelchair out the back so we didn't need all the room to the side. Even so both of us commented, particularly Joe who had to help push me a much longer distance than we usually have to that this was kind of unwelcoming.

In the store itself everything was fine. Aisles were wide, things pretty much well organized. We approached the area where these thingys are sold and there wasn't a customer around. We looked at them on display and waited. The two clerks looked over at us, their eyes dismissed us, and they went back to their conversation. I do not necessarily see this as a disability thing, I see it as a 'you just don't get service like you did when I was a boy' thing.

Finally I called over and a young woman identified herself as the store expert on the thingies (forgive me I've forgotten what they are called). I explained that I wanted this thing for two purposes - the calender and the game. She said, 'It must be important to keep your doctors appointments in order.' I took a breath and said, 'I see my doctor two or three times a year, this is for work.' But it pissed me off that I wanted to somehow justify myself as a working customer.

So she went over the features and allowed me to try various functions. I inputted into the calender, I switched to the variety of calender modes. Looked at the ability to go online, all of that. I decided to buy it. I said, 'I'm going to buy this.' She smiled.

Then I said, 'But not at this store.'

She looked shocked. I quickly assessed and knew that if I brought up her dismissal of me as a customer or her assumption that disabled people are kept frantically busy with hospitals and clinics - she'd not get it. She'd just think I was over sensitive. So I said, 'I only came into the store because we had bothered to drive here. When a huge store like this doesn't bother to have disabled parking in front you are saying something about how you value us as customers. I only took your time because there were no other customers so I wasn't delaying anyone else - but in good conscience, if a business doesn't make me welcome, that business doesn't get my money. I know other stores that have plenty of disabled parking, my business will go there.

She blinked.

Several times.

Then she said, 'But there's parking over by ...'

'And I'll shop there, but 'over there' doesn't make up for none here.'

To her credit, and I almost changed my mind in my protest, she said, 'And the thing about hospital appointments was a pretty stupid thing to say, too wasn't it.'

I laughed and said, 'I wasn't going to bring it up but, yeah, it was over the line.'

She promised to speak to the manager and encouraged me to go buy one of the thingies, she said 'In a week or two you'll never know how you got through a work day without it.'

Somehow I know that after we left, she went straight to the managers office.

Thursday, January 21, 2010

Calling All Bloggers Sex Time Approaches

NOTICE TO ALL DISABILITY BLOGGERS!

Last year Rolling Around in My Head hosted a Valentines Sex Fest! As the disabled kid in glee said the moment he had alone with a girl, 'In case you're wondering, the penis works.' We don't want to talk about it but someone we want people to know. We are HORNY ON WHEELS. Crutches by Day, Sex toys by night. Bad boys and bad girls all want the cane.

Or if sex isn't your thing to write about how about love, mush and slush. Being a full blooded if not full bodies woman. Being a manly man and carrying your love up the stair case in your stairclimber 300. Screw Rhett Butler --- hmmm, well maybe.

Pass the word on to all disability bloggers you know. Link them here or somehow between each other. It would be cool if there were a real technoblogger who could create a blog carnival out of all the entries ... I'm open for volunteers.

We want it all ... serious blogs about love, fun blogs about sex, fetishes and fantasizes, masturbation and master slave relationships.

We want steam coming off those keys as you describe your best crip tonight in the sack. What's the ratio between charm and pity that will get panties to drop. How much boob does it take to get a drunken frat boy to see your wheelchair as hot? These and other questions need answers.

For those who have long leaning (long standing seemed inappropriate) relationships, how'd that happen... details please ...

It's about sex baby, it's about you and me....

Sign up in the comment section.!!

Wednesday, January 20, 2010

12 Steps, Me, I'd Rather Sit

My first lecture in a New Year is a very big deal. It typically happens after several weeks of doing other stuff. It's nice to have the break from lecturing but at the same time with every day that passes my anxiety goes up just a wee notch. It's like I begin to worry that I won't be able to do it anymore, that I'll forget all the stories, that my anxiety will overtake me. This is so much so that I can become quite skittish and distracted for a day or two before.

Yesterday was my first lecture in Oshawa and we were at a hotel chain there. Joe and I drove out the night before and stayed in one of our favourite hotels just a 3 kilometer drive from the venue. We didn't want to have to worry about winter falling all in one night or car accidents along the 401. We got up to a leisurely breakfast, I went over my notes a thousand times, panicking a little less than I expected.

We left ourselves lots of time to get to the venue and we a little surprised to see it was a hotel with 12 shallow steps up a steep staircase to get in. We parked in the disabled parking bay and Joe hauled ass up and into the venue. We were convinced there would be a rear entrance or a conference room down one side of the building. No, I was to come up the stairs. Yes they knew I was in a wheelchair.

Joe simply insisted that it wasn't possible and they got on the phone and found us a venue about 5 miles away. They said they'd send all the conference attendees along. We then drove to the next hotel convinced that people would just scatter off into their own days rather than try to find the new venue. But we were wrong, they all made it.

Everyone made extraordinary effort. Conference attendees were understanding. The hotel that misbooked found a new location, hauled food over to the new setting, were as accommodating as, well, they should have been. So we started a few minutes later. So we lost a few minutes.

These things are difficult because while I appreciate everyone's understanding, I didn't want it. While I was thankful for the extra effort made to find a room immediately, I didn't want it. What I wanted was simple. Accessibility.

Accessibility doesn't just mean I get easily into a building. Accessibility means anonymity. It reduces the need for compassion, understanding, special consideration, to Nil. It allows me to slip in unnoticed and set up quietly. This doesn't mean it masks my disability, it just makes it mean something very different.

The day went well, the audience was lovely, But in part of my mind I had the image of 'Dave as problem, disability as hindrance'. That's not fair because it's not true. But it's there, and I resent it.

Tuesday, January 19, 2010

AARGH!

Sometimes I have to just shake my head and walk away. I have been discussing something which involves a hotel. I've attempted to stay there before, it was a horrible experience. They didn't have 'real accessible' rooms even though they book them as accessible. They had no provision for disabled parking. Several of the event rooms were up stairs, served by an elevator that did not work. The entire venue was covered in thick carpet and their attitude very nearly brought me to tears. Having been a real person with a disability who had real personal experience with a place, one would think that I would be seen as the resident expert on the place.

However in the discussion, even after I meantioned my personal experience there. Someone said, 'I can't imagine that hotel isn't wheelchair friendly.' And that was the end of that. I shake my head at the fact that my voice, my experience is shut out because some ablebodied person thinks that they know better. Even when they have not A)spent time in a wheelchair to learn what wheelchair friendly means B) been to the place in question to check it out.

I've run into this phenomenon a number of times, Able Bodied people telling disabled people that our experience of reality is not 'evidence'. That they know better. And it freaking annoys me. The discussion continues, I grit my teeth and outlined a few problmes I've expereinced there.

Have any of you, been told that your experience was wrong. Parents have you be contridicted about facts that you 'know' about your children, Others experiencing the myriad ways of membership in the disability community ... has your voice, your your experience ever been questioned by someone just because they could. I'm curious, is this a common experience.

Monday, January 18, 2010

Paper Man

We were about to head home from the mall and, as is tradition, we stopped just inside the doors and put on hats and gloves and scarves. I asked if we were going left or right. Joe said, 'Oh, we've got to go back the way we came.' He said it with such purpose that I was surprised after all it really doesn't matter which way we go home. I asked 'What's the deal?' He reminded me that when we came north to the mall we passed by the street guy that Joe has developed a chatting acquaintance with. He sells a newspaper, Outreach, which is printed so that those who desperately need money can sell rather than beg. Joe promised to stop by on the way back and pick up a paper. Often we end up buying that paper several times a month.

'Of course,' I said, remembering. And we turned right and headed down to where he was standing. He's a little uncomfortable with me. He greets me with a varying amount of enthusiasm depending on the amount of alcohol he has in his veins. But his greeting always has that slight sense of hysteria that exists when people are a little freaked. So when we get close Joe said, why don't I meet you at the corner. I said 'Hello' to him first and he gave me a fairly sober 'Hello Bud.' I kept on going and about half a block ahead stopped and turned waiting for Joe to finish. Joe stood looking serious as he bought the paper and listened to an animated kind of story.

I thought about how important it was for us to come back this way. It's easy to keep promises to people of power and people of value. But keeping promises to those who cannot ever hold you accountable - that's the stuff of integrity.

As Joe was walking towards me, the paper in his hand, the street guy hollered out to me, 'That's a stand up guy, there, a stand up guy'. Other than thinking that's a really funny thing to say to someone in a wheelchair - I couldn't agree more.

Your word.

Keep it.

Sunday, January 17, 2010

Courage at Carmen

I heard the oddest conversation. Part of the reason it was so odd was simply because I was there to hear it. Joe and I went to Met at the Movies yesterday to see Carmen. As we watched the screen go live to New York we saw the camera panning over the audience. I noted to Joe that the men attending at the Met had very little in the way of hair. Then we looked around and noted that the audience was of the vintage that makes wine expensive.

During the first act, when I wasn't slipping to snooze like a quarter of the audience. Some come for the Opera, some come for a really good nap. I was remembering the first time we saw Carmen. We had been driving to church when we noticed a sign outside the high school on Harbord Avenue announcing a production of the Opera. Those were the days when we could never have afforded to go to the 'real' opera so we jumped at the chance to see what they had managed.

That production was memorable for the fact that the male lead had broken his leg and was on crutches, which made climbing to the smugglers hangout in the mountains an interesting visual trick and that the entire orchestra was made up of a middle aged woman on an upright high school piano. She banged her way through the entire three or four hours never missing a note, never missing a beat. When it was over the cast got polite applause but she got a standing ovation. But that has nothing to do with my post. But it's Sunday, I'm allowed a leisurely drive.

So at intermission the guy sitting next to us got up and started talking to his female companion. It was clear they were not married but attending together. They started swapping health stories, made jokes about the pills that they were taking. Others joined in and for a few minutes it seemed like we had dropped in on a 'We're all about to die support group'. Trouble was I was finding the topic interesting.

Then the guy sitting next to us started talking about how it was nice to be out, how he'd stopped going out, how he missed going to the movies, going out for dinner, going out shopping. He just can't move like he used to, and prolonged standing would leave him in pain. Then, even after a glance at me, he said, 'But at least I'm not in a wheelchair.' She agreed with him that he was showing courage.

WTF!! Courage is staying in, not going out? Courage is giving up, not adapting and going on? Courage is holding on to what you were rather than embracing who you are? Not only that, saying such a thing in front of someone in a wheelchair seemed to me the height of rudeness. (Not that listening into a conversation that doesn't involve you at all is rude - no, it's, expected.)I wanted to use my bum foot to kick his bum ass. Get a freaking chair and go out shopping, go out to dinner, go to the movies. You only get one kick at the can ... and take it from me, if you can't kick the can. Roll over it!!

Saturday, January 16, 2010

Shush

Because of my height, everyone knows me as fat but I am also quite tall, I have a little bit of trouble with wheelchair footrests. On both my manual chair and my power chair the rests are set as low as they possibly can be. It works such that in stocking feet I am quite comfortable, when I am shod I am quite uncomfortable. That little bit of extra height makes such a difference. As a result, in my power chair, I have take to wearing double socks and hoping for the best.

This was OK until the temperature fell and it was very cold. It seemed to be a choice of wear shoes or stay in. Then I tried using the slippers knitted for me for Christmas - I was a bit shy of the idea because they are white. And white slippers draw attention to themselves as white slippers. No one had seemed to notice my black socks as being 'not shoes'. Even though I stick out, I like to blend in as much as possible.

So after writing a blog about going out with my white slippers, my tuque, my gloves and a blanket over my back, someone commented - why not get your niece to knit you black slippers. Seems an obvious solution. I'm not all that good at asking for favours but I put my pride aside - easier to do than you might think after going down Yonge Street looking like a float - and wrote and asked Shannon if she would mind making me a pair of black slippers.

She agreed and then the other day wrote and told me that they were on their way. I was thrilled. I'd worn the other slippers out a fair bit and really wanted the black ones. Joe and I arrived home a couple days ago and I heard the envelope slide on the floor as the door opened. 'The slippers!' I uttered with glee. And sure enough, black slippers were in my hand.

Fifteen minutes later they were on my feet and we were heading out to do some banking. No one noticed my slippers. And now I wanted them to -- LOOK, LOOK WHAT I'VE GOT - THESE SLIPPERS MEAN THAT SOMEONE CARES ABOUT ME. So I've got my demure slippers. We're going to see Carmen today at the movies. I'm so glad because I'll have on my black slippers. When I wore my white slippers to the movie there was this reflected glow around my feet, it looked like my halo had slipped and fallen around my feet. But now I'll sit with my feet, appropriately, silent.

Friday, January 15, 2010

More Than Meets The Eye

Several years ago I had decided that I wanted to work within an agency on a particular project. When I first mentioned this intention to a few friends, they all laughed thinking that on one in their right mind would hire me. As a speaker and a writer I had taken a number of uncompromising stands and managed to create a controversy or two. They didn't think there was an Executive Director alive that would chance hiring someone used to having an ungoverned point of view.

Although others thought me controversial, I always thought of myself as almosting boringly unoriginal. The idea the people with disabilities were necessarily sexual and therefore needed both training and healthy environments to live it - what made this controversail was only that I said what everyone knew. The idea that abuse was simply wrong and that people with disabilities deserve to live in safe places - was controversial only in that acknowlinging this simply fact meant finally addressing the issue of abuse. I used to give a speech and drive away saying to Joe, 'And they pay me for this shit.'

So I was considered controversial and a bit of a maverick because I simply described the world the way I saw it. Gradually the stances became less controversial because - um, they aren't really. But I still had the wee bit of a reputation of being a loose gun. I didn't think I'd ever end up with an office and a mandate to work within towards change. I didn't think I'd ever end up with a team to work with, to learn from and to grow with. But I did. Ironically, althought I drew up a list of three very strong women, executive directors all, who I thought might be up to an exciting challenge and to the chore of supervising me, my first interview led to my first offer and I was off and running.

In all my years of doing what I do I've given lectures attended all sorts of meetings but have always been kept away from going to meetings of consequence, mistrusted to have the maturity and the politic to speak for the agency. Such a meeting was coming up, a meeting of real importance, my boss called me in and asked me to attend in her stead. I was stunned.

We met several times to go over what needed to be acheived, what the agency point of view was. We discussed issues, argued over wording, and came to a joint response. I had them all ready with me and went to the meeting. As I NEVER have been in this kind of forum before, I was nervous. Part of what made me nervous was the simple fact that I had been trusted with the reputation of an agency that I care about.

I don't know how others felt about what we did together yesterday, but I liked it. I felt that we all heard each other, agreed sometimes, disagreed others, but feedback was given and heard. The work we had done in preparation was well recieved, for the most part.

What I'm really writing about is how nice it was to be trusted. I think employees do well when they carry their supervisors trust. I had one supervisor who made me sit and and review every point I was going to make at a meeting. Another who made me write out what I would say at a conference. A third gave me a list of things I could not say at all. Hence, private practice. But this was nice. The feeling of being trusted is hugely motivating. The need to be trusted is hugely important. I'm not sure I have understood this well in my life or in my work.

Trust. An issue for me on so many levels. After today, one that I'm going to see to a wee bit more.

Thursday, January 14, 2010

Jolly Hockey Sticks

I rode on the Subway yesterday after work. I do not typically ride the Subway during the week and was a bit shocked at how crowded it is. People had the same bland reaction to me as they did the crazy woman who kept walking up to men pointing to them and saying 'you've got a penis' and then walking away. No one reacted, probably the right reaction. So, I was just another passenger amongst a diverse stew of passengers.

We got on the train and were heading north. Not knowing the system well, I park right in front of where Joe sits facing such that I can drive out either door when it opens. My chair backs up slowly so I have to go off front first. This position leaves me in the aisle.

You know I've read a number of blogs about how to interact with someone in a wheelchair. That doesn't apply here because the etiquette of the Subway it that it is not a place to meet others, it's a place to transfer through. Besides people who make friendly eyes at you on the Subway always give you a sense they they're just a tad left of center. So, I have no desire to interact with you, you have no desire to interact with me.

But I'd like to remind you that when you have a knapsack on your back, you have a knapsack on your back. When you swing, it swings. It's part of you, be aware of it. Oh, and when you swing around and hear an 'ooof' or an 'ow' or the smacking sound of bag against flesh, stop the turn. Don't just keep forcing it - like every single person did yesterday.

Similarly when you are carrying hockey sticks or hockey equipment, remember there are people around. I almost got pucked by one guy who, while talking, had to move his hand that was holding his hockey sticks (two of them) and they came straight for my face. I called out hey and slapped the sticks away. He looked at me, thinking I was a wacko saying 'hi' and said, 'Yeah, hey man.'

Finally, the handles on the back of my chair are not public property. Do not hold them when riding the subway. It feels like a violation so it is a violation. This is my space that is yours.

We got where we were going only to find that we had to turn around and come back - a phone call makes a difference. We took the Subway immediately back. Hmmmmm. Research, I thought. Hit by two knapsacks, there were no hockey sticks, but did get one, 'Wow, you are so brave.' Um, I'd rather fend off hockey sticks than hear praise borne of pity.' But that's the subject of blogs I've written before.

Got home without losing an eye or having my neck thrown out. I'm thinking it was a pretty good trip.

Wednesday, January 13, 2010

Yikes

Sometimes it is a challenge making a whole blog post out of a tiny moment, but sometimes it's tiny moments that have gigantic personal meaning. Here goes.

Last Sunday, Joe and I went out for lunch with neighbour lady across the hall. Tessa is a scooter user and the three of us make quite the sight making our way down Yonge Street, me in my chair, she in her scooter and Joe limply slowly making his way behind. We chat on the way down, trying to always be aware that we need to leave space for other pedestrians (a courtesy that isn't always returned). We were headed to a food court in a nearby mall because we knew they had hot and sour soup which sounded good on a cold day.

When we arrived and took of first one, then another and finally the last layer of covering, we were ready to get our victuals. When we got to the counter we noticed that they had a tofu and rice dish on the menu for that day, Joe and I switched to the tofu dish and Tessa, wisely, stayed with the hot and sour soup. When the food arrived and we were all tucked into our table the soup smelled wonderfully of flavours and the tofu dish was bland to the point of being aversive.

After one bite I looked up at Joe and said, 'It really needs some soy sauce, would you mind getting some?' There was a pause and then Joe said, 'No, you go get some.' In a second I realized several things, first I was sitting closer to the food counter, second I was in my power wheelchair and third I was getting so used to dependency that my first thought was to ask for help.

I laughed and said, 'Of course, I'm in my power chair, I don't even know why I asked you.' I went over and easily, more easily than if Joe had to do it, got the soy sauce. We went on with lunch but I knew I'd be thinking about that moment for a while. And indeed I have.

There is a really addictive nature to dependency and receiving help. At least there is for me. I can forget to do it for myself when there is someone around who can do it for me. Oh, not in the big things, I can think for myself, I can speak for myself, but in the little things. And I've seen it in other disabled people too. There is a woman who is often on the same route as I am in the mornings on the bus. She is also in a manual wheelchair. She, like me, can stand and can walk a bit. Now when I get on the bus I always get up and walk up the ramp. I'm very heavy and I don't ever want someone injuring themselves pushing me up a ramp that I'm capable of getting up myself.

However, I sit and watch this woman being assisted off the bus, often with some difficulty as the driver maneuvers her chair around others on the bus. She is also very big and the drivers have a difficult time. I've never seen her stand, which she can, so the driver can easily move the chair. Instead I see her ENJOYING her dependency. She annoys the hell out of me.

And then, at lunch, I reflexively ask Joe to do something I very much can do on my own. Arg and Arg again.

Thankfully Joe had the moxie to simply say 'no'. I hope that other disabled folks reading this also have people in their lives who say 'no, do it yourself' when it's appropriate. I hope that others who love disabled people have the courage to deny help when it's not needed. Every now and then we need to be reminded to use the competencies we have and to think constantly of what we need and what we don't.

Thanks Joe.

Tuesday, January 12, 2010

Photo Op

It may have been both the oddest and the nicest email I've received for quite a long time. Joe and I are going to Edmonton to do a presentation in February and the host there is being very mindful of the fact that I have a disability and need accessible spaces. Instead of simply relying on the hotel to book an accessible room for us, she decided to go look at the rooms herself. She said in her note to me that the hotel conference manager was surprised to find that the first room they went to that was designated as 'accessible' had nothing in it that would meet that designation. They then went to the next room.

That room looked accessible, but to be sure, she took pictures of the bathroom, bedroom and door. More than that she actually measured the door and sent that to me as well. I don't think I have ever had anyone send me a picture of a bathroom before! And I am wildly appreciative. Accessibility is an incredibly personal thing, I have discovered. Hotels often attempt, half heartedly I think, to make a room accessible by putting a bar in the shower. For me, though, the toilet's the key. I need either a tall toilet or bars around the toilet. Either is fine. Neither is impossible.

I've had so many fights over bars in toilets that now when we book hotels we ask them that question specifically, take the name of the person who told us there would be bars and then get to the room and check immediately. Ah, the joys of travel. But all of that is going to be OK because of just an extra bit of care. Photo's of the toilet!

Now the way the photo was taken I couldn't see around the toilet, I could see bars in the shower, but still don't know if they are around the toilet. But, know what, when I sent the question I know I'll get an answer. I'll be able to fly in anticipating a room that meets my needs. How nice is that? I used to worry about being a bother, I don't any more. Wanting to be able to use the washroom in a hotel room ISN'T a bother, it's a RIGHT.

After sending off the email to our lovely host. I said to Joe. I remember when 'checking out the bars' meant something very, very different. Oh, well, age.

Monday, January 11, 2010

Questions!

I received a lovely email from a student who is reading 'Just Say Know' at school and took a shot at writing me. At least twice a year I get these letters. But what made hers different was that she wasn't asking me to do anything in regards to her class. The letters usually ask me to write a few paragraphs of an essay or help them with a take home examination. I always try to respond to emails (sometimes I fail) and I let them know that as they paid to take the course, it would be wrong of me to get in the way of their learning by providing quick answers. Even though I don't help them, I do kind of admire their moxie.

This letter said that she was curious about me and wanted the answer to fifteen fun questions. I've written her back an told her that I'd answer them on the blog. So here goes, Kelly:

1) Name ten simple things that give you pleasure

tea
reading
cooking
the smell of vanilla (real vanilla not vanilla candles p u)
watching dogs play
Chimes Ginger Chews - Mango, Orange and Original
visiting with friends
fart jokes
secrets
bedtime

2) Name two trivial annoyances

people who don't say 'hi' back when you greet them
being in my wheelchair and having to drive over what people hork up onto the street

3) Name the best book you've read in the last 3 months

Tie: City of Thieves by David Benioff and Crime and Punishment by G. F. Newman

4) What's the best movie you've seen in the last 3 months

A Single Man

5) When you were 12 what did you think you'd be at your age now

Dead

6) What message would you like to send to the 12 year old that you were

You won't be dead - and it will be OK

7) If you could see into the future would you want to

No, not at all

8) If you could meet a fictional character who would it be?

Dug, the talking dog or, if he's busy, Bugs Bunny

9) If you could meet a living famous person who would it be?

Madonna

10) What is your most valuable possession?

My mobility devises.

11) If there is a heaven what do you want to find there?

My dog Eric.

12) What food do you wish had no sugar, no fat and no calories?

Cinnamon Buns

13) What three non essential things do you always take when you travel?

tea, books, my 'lambies never crash' plastic lamb

14) What do you miss most when you are away from home.

My life.

15) Last thoughts?

This was more fun than I thought. Thanks for asking a few different questions.

So, Kelly, I don't think any of this will help you as you read Just Say Know in your class - but thanks for contacting me. I invite other bloggers to do these 15 questions and put your blog address in the comments so we can come, visit and get to know you, if not better, at least differently.

Sunday, January 10, 2010

Except, Of Course

It's so important.

Under-rated.

Yesterday we had friends down from the country to visit us here in the city. It was the first time they were to see our new stomping grounds, to see me in my power chair, and to get a glimpse into our new lifestyle. We're 'tea' friends. I've known Belinda for a very, very long time. I've known Susan for a long time. We meet in places like Starbucks for tea. We chat, we laugh, we share time with each other. I met both Belinda and Susan through work, I'm not sure how they met but I know they've known each other for a terrifically long time as well.

We got ourselves a table at a coffee shop that has tables that wrap around the escalators going up and down. From that vantage point you can see people everywhere. It's wonderful for people watching and a perfect place to relax and enjoy tea, coffee and treats. So we did.

And we laughed.

And laughed.

And laughed.

We told stories. Shared memories. Talked about kids and grand kids. At date squares. Drank tea. And laughed.

It's nice to have friendships that pull you out of the flow of time. Friendships that make you stop, give you perspective. We can all get so caught up in the seriousness of living, the burden of making a living and the stress of making a life, that we forget, simply, to laugh. Yeah life is hard. Yeah living is tough. But, isn't it kind of funny too.

When we first arrived, I sat in my wheelchair and held the table as they went off to get the drinks and treats. If I was noticed at all, I was noticed as a disabled guy at a table alone. Minutes later surrounded by friends, conversation and laughter, I was one of the people at a table that others looked at and thought 'Aren't they having fun.'

I'm not sure how they felt as they drove home but both Joe and I felt a good kind of tired. Being tired from laughing feels way different than being tired from worry. And you know what, I slept like a baby last night.

Except of course, I pee'd in the toilet.

Saturday, January 09, 2010

The Request

'I'm just a little tired today, would you mind running over to the store to pick up a couple of things?'

What a wonderfully ordinary request. It's the kind of thing that couples say to each other all over the world. It's a conversation that involves expectation and reciprocity and equality and mutual need. A few words that wouldn't be noticed except in homes like ours.

'Of course I will.'

It was nice to be able to say 'yeah, of course' to reassure him to 'not worry about it, I'll do it' because I was entirely able to, for the briefest moment, carry the load for the two of us. When we got in, I saw Henry sitting there waiting for me. He's a powerful power wheelchair and he's got the capacity of carrying me, a dozen beer and a few groceries. Henry is the Mac Truck of wheelchairs.

'You sure you don't mind?'

Don't mind!?! After all that Joe has to do to keep me going. After all the little things that are physically out of my reach are completed each day, doing something for him is awesome. Even something small. Even something trivial. I felt like I had hooked my self esteem up to the tire pump at the garage - lifted.

'See you later.'

Off on a mission. I slipped first into the book store and picked up a book that Joe had read about recently, one he really wanted to read. Yeah, Christmas was over but a wee gift in January is kind of a nice experience. Then I decided to get some money. The closest Bank Machine charges a buck fifty per transaction, I drove all the way to the end of the mall to one from my bank and paid none. Then it was back to pick up the items on the list. I was enjoying the independence. Outside into the brisk cold and back home. Managed to get in the two front doors all by my self for the first time, rah me having a good day.

'Thanks, I just wasn't up to it.'

To whomever thought up, developed and made available the power wheelchair. God love you. To the Government of Ontario who helped me buy my wheelchair. I deeply thank you. Because today, was a pretty good day.

Friday, January 08, 2010

Saying It All

Really.

I don't make New Years Resolutions.

Really.

I don't.

But oddly. I'm making some new decisions. Delayed decisions but new ones nonetheless. Yesterday I wrote about an apology. This is something very different, but comes from a similar spirit.

An opportunity was offered to me through my position at work. In talking through the offer, I realized that I really wasn't the right mate for the opportunity. But I knew who was. Exactly who was.

A woman I have worked with for several years has really impressed me. Let's be clear that she was a pretty cool person at the get go, but over the time we've worked together, I've seen real growth, incredible maturity, and an ability to make good decisions. She has learned so much, represents herself, our team and Vita really well. I thought that I'd like to offer her the opportunity so set it all up. Confirmed that it was OK to make the offer with the person who called me - sorry for being a bit cryptic but I need to be.

Then I emailed this young woman and asked her to call me. She did. I informed her about the offer, told her I thought she was a good match, she said she was interested, I said great, we rung off. Perfectly pleasant.

But the call bothered me.

Why didn't I tell her that I made this connection for her because she has grown into a spectacular person. That I admire how she carries herself. That she constantly impresses me with her forward thinking. Why didn't I tell her? I really don't know. I didn't even know if it would matter all that much to her this bit of praise, no not praise, honest acknowledgement.

So, I called up may email and sent her a message. I told her how I felt and how impressed I was with her and that the reason I came to her was because of the fact that I admire who she has become. I paused for a long time before pushing the send button.

But I did.

And it mattered.

To both of us.

Two days and two new decisions. One to apologize when apology was necessary. One to be more forthcoming with positive sentiment. Both are about becoming a bit more authentic in my relationships with people. Both are about becoming a bit more authentic in my relationship with myself. This isn't about New Years. Something's happened somewhere in the lost regions of my heart. I'm not sure what it was, I'm not sure why it's happening now. But I kind of like it.

Hm.

Maybe, at last, I'm growing up.

Thursday, January 07, 2010

Feeling Good!

I'm feeling good right now. Better than I deserve, but nonetheless, I'm feeling good right now. You see, as much as I try, I still mess up. Make mashed potatoes instead of baked. Get it wrong. Hurt people. Lose perspective. I'd thought that as I got older I'd get wiser, I'd dig down and find a vein of profundity running deep through the muck and mire of my subconscious. Nope, I dug deep and found candy wrappers.

So, I messed up a while back and as a result I hurt someone. I didn't realize it at the time. So caught up in my own self-righteousness that I didn't notice the expression on their face, the pain in their voice. Didn't notice at all. I forget that I make mistakes, buy my own press - he's so sensitive. Blithely travelling along making sunshine where ever I go.

In a moments clarity I felt that a strain had grown between myself and someone else. I knew, instantly, that the strain had a cause. That the cause was me. I looked back at the situation that we, she and I, had found ourselves in. I saw how my behaviour could be hurtful. So what did I do with this news.

Nothing.

Well, maybe congratulated myself for being willing to see myself the villain rather than the hero of a story.

But nothing, really.

Until today. I called her and asked her to drop by my office. She did.

Do you know how hard it is to apologize for something you did. To apologize because you actually need to apologize?

The words formed in my mouth and it was difficult.

But I apologized.

We talked. I felt relief from her. I felt relief within.

I felt forgiveness because she is more gracious than I.

And right now I feel good.

Really good.

Because that's one burden less to carry along.

One hurt less in the world.

One bad action atoned for.

I get the sense, just a hint of an idea, that God is grinning.

Wednesday, January 06, 2010

The Lottery

Sharp eyed readers will know that I'm referring to the book by Patricia Wood, a wonderful story of a man with an intellectual disability. A couple of months ago we announced that Rolling Around would be hosting our 3rd book club. Lots of you signed on and I said I'd set a date in January.

Well, the date is nigh upon us, January 25th will be the day that we talk about the book together. What is very cool is that Patrica Wood, the book's author has agreed to write something for the blog that day. What an honour to have her join with our little community here and to hear what she has to say about the writing of the book and the development of the characters within.

Vita Community Living Services has a book club and we will be meeting on that same day. Christian Horizons, a fellow service organization, has some staff that will be joining us and I anticipate a wonderful discussion.

So, for those who said they'd join - if you haven't read the book, get pounding. For those that have, be prepared to add in a few words and particularly welcome Patricia to the forum.

To remind you, there are two ways to participate in the Book Club, for those who have blogs, you can blog about the book and link to us here at Rolling around and put your contact information in the comment section so readers can pop over and visit your blog. Or you can simply just write something in the comment section of the blog that day. This has worked well in the past and will do again I'm sure.

I'm all excited!

I'd also like some suggestions for future book club meetings. The only criteria is that the book must have something to do with disability in some way. So what's good out there?

Tuesday, January 05, 2010

Lo -who?

I had hoped that travelling on WheelTrans to work I'd meet others in the 'crip community' and maybe even make a friend or two. Well, that was a naive hope. As I only use the service to go to work, Joe picks me up and takes me home, I'm on the bus quite early. I've discovered how rare we morning people actually are. There I am all bright eyed and full of morning greetings and I'd be met with either a polite 'good morning' with an 'and leave me alone' tone of voice or just plain stoic silence. OK. OK. Even amongst people without disabilities I admit to being AWAKE really, really AWAKE very early in the morning.

So imagine my surprise when I was staring out the side window and another passenger, an older man, got into the seat beside the drive. He turned and said a brisk and bright 'Good morning'. My heart lurched, I AM NOT ALONE. I answered quickly and just as quickly we were talking. He told me the history of his apartment building and how he came to live there. Turns out he is a retired lawyer and loved to chat. We talked about all sorts of stuff, politics, relationships, weather. This is my kind of guy.

Then we turned to pick up another passenger. As we pulled up to the house I saw that it was a group home and on seeing us a woman with Down Syndrome got up and headed over to the bus. I was sitting on the back bench of the van, my wheelchair folded up in front of me. She got on the bench beside me, nodded a hello to me and then said, 'So how are you today?' in a cheery voice to the man up front.

Turns out they often share a ride. She goes to a workshop and he goes to a rehab place for morning exercise and they are on each other's routes. He joked with her about the snow on the ground, she joked with him about the snow on his head. She was fast and funny. They obviously had come to enjoy each other. So, now we all three chatted. Time just flew by.

When we got to where we were to drop him off the 'lift barrier' wasn't working so the drive, who had said not a word, got out to go to the office to get them to lift it so we could get in and his passenger be dropped off. I made a comment about how the driver was a tad less than friendly. He, the lawyer dude, made a comment to the woman with Down Syndrome that the last time the driver had been quite, and I'm quoting here, I'm also typing the word directly from the dictionary, 'loquacious'.

There was a pause and then the woman with a Down Syndrome spoke up and said, laughing, 'Hey, use words that I can understand!" He laughed and said, 'He talked a lot.' He then winked at me and said, 'We play a game, every time we travel together I'll use a big silly word and she calls me on it.' She grinned, liking the game, liking the opportunity to be assertive.

Then he got off the van waving goodbye to both of us. Lovely guy. I understood in a second what he was doing, he would know - as a lawyer - that words can be used to clarify but words can also be used to establish hierarchy. A hierarchy that can be destroyed simply by a demand for plain language. I don't know who he is, I don't know why he is concerned about her ability to speak up and demand plain language. There is some history there, some story I'd like to hear.

I know that lawyers often suffer when their proffession is subject to floccinaucinihilipilification, and people with disabilities are constantly subject to floccinaucinihilipilification ourselves - maybe this led to a connection. Maybe something else happened ... whatever, it's a story I'd like to hear over a beer. From either one of them, preferably both.

Monday, January 04, 2010

Monday Monday

It's time to go back to work. It's time to focus again on things that have need to be done. I'm one of the fortunate few whose work is also his passion - I wake to purpose, I work with purpose, I go to bed having fulfilled purpose. This is such a wonderful way to spend a life - being enriched simply by being open to the opportunity of relationship. How cool is that?

When I was younger, vacations meant something different than they do now. Vacations involved partying, hitting the bars, drinking, even carousing. Vacations were loud. Vacations were fast. Vacations were expensive. More than anything, vacations were exhausting. One needed to get back to work to rest from the work of partying. Mondays came hard, but they were like a bucket of cold water splashed on a beery face.

Not so any more. Vacations now are for rest and relaxation. Napping in the afternoon, complete with drool, is simply delicious. Curling up on the couch with a book, working on DS puzzles, playing games on the computer, ah, hours well spent. Visiting with the neighbour across the hall, chatting with friends on the phone, going shopping and considering it an 'outing', ah, I'll take days and days like these.

There was a scene in the movie 'Nuts' where a woman was in court listening to the written opinion of a psychiatrist. She was offended at what he had written and stood up in court and said of the psychiatrist to the judge, 'What if he's just an asshole?' Though I remember nothing of the movie, I've always remembered that scene. That word 'asshole' is so replaceable with 'tired' or 'hung over' or 'distracted'.

As someone who write reports about people for people, as someone who gives opinions, as someone who has more power than he ought in the lives of others. I'm not going to work with a hang over. I'm not going in with a dry mouth and a headache. I'm not going in exhausted. With responsibility comes responsibility - it took me a long time to notice that.

Of course I still party. Of course I still go out to bars. Of course I do silly things with my time. But carefully. And judiciously. With full awareness of what tomorrow brings.

So, I can promise that tomorrow I will be clear eyed ... whether or not I'm an asshole at any point - others will have to judge.

Sunday, January 03, 2010

OUT!!

There was a time in my life, believe it or not, where I had a wee bit of pride. There were just certain things I would not do. I would never wear a tuque. I would never carry an umbrella. Gloves and mittens were for women and soft handed men. Scarves got in the way and irritated more than warmed. Above all, I would never, ever, wear white socks with black shoes. I may have been fat my whole life but I did have a fashion 'no' or two. I'm not sure why these things were so important to me, but they were. It's amazing how things change.

Really change.

Yesterday was really cold. We had decided on going on an outing down to College Park mall. Joe kept saying, 'You're getting over a cold, you don't have a really warm jacket. What are we going to do to keep you warm. I don't have a tee shirt. I don't wear tee shirts. But I had determined I was going out, and I had determined I would be warm. Here's what I wore, two pair of socks covered by my white slippers knitted especially for me by wonder-knitter niece. They are warmer than my shoes. Who cares that I was wearing black jeans and my double socks were black. Apparently not I.

I then put on my sweater-jacket and sat on the chair. I pulled my dark blue blanket off the couch, folded it up and draped it over my back, shoulders and chest. I got a blue toque and pulled it down over my ears. I zipped up my sweater, right to the top so my collar stood up and thus wrapped around the lower third of my face. I then put on two heavy blue mittens. I was dressed to go.

Joe sent me ahead as he needed to get some bags to take with us for the grocery shopping. I rolled down to the elevators and as such drove by the huge floor to ceiling mirrors that hang across from the lifts. I looked, for all the world, like a laundry hamper come to life. I was blue upon blue, with two little green eyes peering out at the world. And there, flashing my arrival were my bright, white feet.

Thank heaven's we were out of the building quickly because I was beginning to swelter under there. On our way down the wind was bitter and the temperature frigid. Even through the layers I could feel various parts of my skin pucker and tremble in the cold. But I was out. I may not have been a 'man about town' as much as a blue clad Sherman Tank. And I didn't care. Not one whit.

We got into the mall and peeled off the layers, stuffing them into the bags that we had, I was looking back to normal, or so I thought until I caught my reflection in the mirror. There was my white, white face, with a strip of red, from flesh freezing, across my eyes. I looked like a horny raccoon.

The look oddly pleased me.

Saturday, January 02, 2010

The New Battleground

I rolled over to see a worried face. "Are you alright?" Joe asked. "Um, yeah," I said barely conscious. It seems that, last night, I slept right through only getting up to pee and coming straight back. My normal routine is to be up somewhere between 3 and four to write this blog, then play a game or two, then go back for a catnap before the day starts. I never, well I guess now I need to say, I almost never, sleep in. I smile even saying that because 7:40 is hardly slothful, even so, I've slept in.

This came about because of an active decision. I was up, per normal, for my 'I'm 57, so I heartily Thank God this pee is in the toilet' pee. From the bathroom I usually veer into the office. My housecoat is draped over my wheelchair waiting me. I stood there and thought about it. I was called to get up, I was called to go back to bed. I'm very disciplined when it comes to the blog, to writing and to fulfilling my duties. I stood there thinking about dedication and suddenly thought, 'Screw it.' Seconds later I was back in bed, a few minutes after that I was snoring.

After waking, and before getting up to write, Joe turned on his light to read the book he is slogging through. I've read it. It's a tough read. (Anyone else read Drood?) I said to him, if you aren't enjoying it, put it aside, read something else. This kind of shocked both of us. We tend to finish books we start and seldom ever just stop one we aren't enjoying.

It seems, I've realized, this New Years, that we've surrounded ourselves with rules that don't matter. Who says that blogs need to be up and ready for people between 4 and 5. It's a blog. It's a personal choice. I choose to write daily. But the word choice has come to mean 'must'. The essence of choice had been lost. I got up this morning and there wasn't a single email saying 'OH MY GOD YOU DIDN'T PUBLISH THIS MORNING BETWEEN 3 AND 4 - MY LIFE HAS GONE OFF THE RAILS". I daresay only a few noticed (and I know them all by name! us early risers are like a club. we know who else is up when we are) and those that noticed didn't really care.

Dan Simmons isn't going to come aknocking at our door to demand why Joe didn't finish the book. No one will ever know and those that do will be thinking, 'You have A RULE about reading books?' Well, until now, we kinda do. It strikes me that we have made a number of silly rules about how to live our lives. Some of them are important, things to do with character and integrity. Surely there are lines I will not cross, rules I will not break, because they speak to who I am and what I believe.

Nonsense rules need to be challenged. I'm going to practice this here at home and then begin to take them on in the real world. I want to end the tyranny of 'because that's the way we do it' and enter the utter chaos of 'because that's what I decided in this moment.' I've always fought against tyranny and tyrants, now it's time to take on the ones in my life and in my head.

Victory!

Friday, January 01, 2010

HNY

The New Year begins quietly. I'm getting better, slowly. I'm blowing my nose less often. Coughing less harshly. I feel a little more ambitious and a little more like being part of the world. It wasn't such a bad thing to be pulled away from the world a little bit, at the end of the year, to rest and to think. After both experiences with the Ballet, I needed time to think about who I am, how I fit in the world, and the tasks set before me. The responsibility of having a voice has never seemed clearer to me.

This was made more so yesterday. Mike and Ruby dropped by for an hour in the afternoon. It was a surprise visit, but a delightful surprise at that. I keep a few toys and puzzles here for her just in case. I asked Ruby if she'd like to do a puzzle together and she nodded happily. So I set it up and we began work. Joe and Mike were talking in the kitchen, Ruby and I were working at my desk.

Ruby and I have always talked. But our chats have mostly been me asking a question and she answering 'um, yes' or 'um, no'. This was somehow different, this was our first conversation. A back and forth. She initiating some topics, me initiating others. I'd like to tell you about two conversations - one germane to this post, one just for fun.

For fun:

"Why do you put those cards up there," she asked pointing to our display of Christmas cards.

"We put them up so we can enjoy looking at them," I said.

"Oh," she said, satisfied.

"Do you like them," I asked.

"Who gave you that one," she asked pointing to a stark and beautiful card, a winter scene with a man walking alone on a snowy field with his dog.

"My Mom and Dad," I said.

She looked at me wide eye'd and said, "Who?"

"My Mom and Dad," I said again.

"You have a Mom and Dad," she said with, almost, disbelief.

"I do," I said.

"Wow," she said. I don't know exactly what she was thinking but she looked like she was trying to calculate the age of the universe.

More on point:

"Did you have a good time with your cousins?"

"Um, Yes," she said.

"That's good," I said.

She paused, lowered her voice and said, "Ashton hits me sometimes."

I saw every shade of red that it's possible to see, but stayed calm, "When you're playing?"

"When he gets mad."

"What do you do when he hits you?"

"I run away from him."

"Anything else?"

"I tell him to stop."

"Good girl, what do you do if he doesn't stop," I said.

She shrugged her shoulders and said, "I don't know."

I said, "Well, think about it. What could you do?"

She said, "What would you do?"

I said, "I'll tell you after you think of something else to do."

She thought and said, "I could tell his mom, she doesn't like him hitting."

I gave her a hug and said, "Wow, that's exactly what I would do too."

Ruby will always be her first, her best, advocate. She will need her parents, she will need teachers, she will need other adults along the way. But she needed to learn early that it is her voice that needs to be heard, her thoughts that needed to be honoured, that she has the capacity to figure it out for herself. It would have been so easy, and I so wanted, to start telling her about how wrong hitting was (as if anyone who has been hit didn't know) how she needed to tell him and then tell someone else. But she knew these things too, she didn't really know she knew them, but I did. I know that inside her, inside this three year old girl, is the capacity to think, reason and solve the problems life sets out in front of her.

Voice.

For me, this is the year of Voice.

Practice using it.

Practice hearing it.

Join me.