Tuesday, June 30, 2009

Accessibilizing The Day

We decided to 'accessible' the city. A beautiful Saturday morning loomed and we were going off to see the opera on the big screen. The closest one to us is a bit to far for me to roll and Joe to walk. A quick check on the internet and we discovered that we have several accessible subway stops near us and the closest to the theatre is also accessible. I loaded tokens into my pocket and we were off.

At Queen's Part an elevator rises out of the ground and we got on and road down into the system. This was my second trip on the subway so I wasn't quite so nervous. I launched across the divide and onto the car. I figured that I had to turn around to get off on the same side I got on and I had a few stops to manage getting into position. Arriving at Osgoode we got off and rode over to the elevator that would take us up to street level.

As I pulled up to the elevator I notice a big concave mirror that allowed us to watch ourselves approach the elevator. I'd never really seen myself in my power chair before and I was pretty amazed and how quickly and smoothly I zipped along. It was a new image for me to put into my head when I think about myself. As I spent most of my life walking and only a few years now rolling, when I picture myself, I see myself walking, standing ... using shoes. Now, I saw the reality - and it was really OK.

We rode the elevator up and made it there in plenty of time. On the way back we took the subway to a different destination because we had decided to go for a stroll down Church Street the day before the big parade. There were several obstacles but most of them had been made wheelchair friendly. All the cords that criss crossed the streets were encased in these odd 'things' that were ramped on both sides. I was nervous of them as they looked steep, but I managed to make it up and over with no real difficulty.

We noted that there were accessible toilets everywhere and ramped disability viewing stands in several different spots. I stopped and chatted with some guys who had volunteered to help with disability access. They were cool, clearly well trained, incredibly respectful.

So we had a day out accessibling (my word) the city. I had a degree of freedom that was unthinkable for people with disabilities a generation ago. I had a degree of respect that disabled people fought hard to garner. I had a degree of value as a fellow citizen that spoke to me of welcome.

We have far to go, but my oh my, how far we've come.

Monday, June 29, 2009

40th Anniversary

Today is our 40th anniversary, thanks to Mike and his family for the wonderful photograph above. Instead of writing a typical blog, here are answers to five questions we are often asked, leaving out the inevitable, what do guys do in bed together anyways ...

Question: Did you plan your anniversary to be so close to Gay Pride Day?

Answer: Our relationship began 40 years ago, one day past the Stone Wall riots that began the gay movement and would eventually become Gay Pride Day. We had no idea what was going on in New York at the time. After all we were high school students in Campbell River. So our relationship is one day younger than the modern Gay Pride movement.

Question: Who asked who out?

Answer: Oh, there was no 'dating' for two 16 year old boys back in those days. I had met Joe in the hallways of high school in Grade 12 and discovered that he was also going to the University of Victoria. We agreed to share rides up and down island, Joe would pay half gas. Well, he never paid for gas and the rides took longer than they ought.

Question: Do you ever fight?

Answer: Well, Joe is more difficult than you might imagine, so yes, we fight. Our fights now are shorter, less mean, and haven't much of an emotional hangover. Sometimes we get to the edge of a fight and Joe will say, 'Do you have the energy for a fight?' I'll say, 'Nah'. And it will be over. There is a good side to being tired all the time.

Question: How has Joe adjusted to you becoming disabled.

Answer: It is more work for him, what with the wheelchair and all. But, remember, I haven't changed. We organize ourselves better. We think things through. It's all OK. What's interesting is that people notice this adjustment, because it's a big one. We've been adapting to each other's changes for all of our 40 years - that's what makes a relationship work.

Question: Do you have joint goals for the future?

Answer: Yes and no. We, of course, have professional goals. But as to personal goals, we keep it simple. Live well together. Do well together. Sleep well together.

So there you have it. I'll be back tomorrow with more 'disability oriented' blogs. I've got a list of little notes beside me to remind me of things that have been happening over the last few days. But Gay Pride and the 40th just got in the way of regular life.

Sunday, June 28, 2009

Pride Day

It's Gay Pride Day, I have a rainbow painted on my forehead. I'd like to share with you the email I am sending to Vita Staff later on today.

To My Fellow Staff:

It's Gay Pride day today. Yesterday Joe and I wandered down Church Street in Toronto and enjoyed the carnival atmosphere. We shopped at a couple of booths, ran into a couple of friends, saw a couple of gay dogs. This Toronto, this day, is a far cry from one that was etched into my brain with Trauma's sharp pen. It was Hallowe'en, years and years ago, and three of us were going to go for a beer at the Saint Charles tavern. The Saint Charles was one of the few places where gay people could go, experience both welcome and an odd form of solidarity.

We did not know, and could not imagine what would greet us that night. We could get no where near the door of the bar. There were crowds upon crowds of people. Young and old, drunken teen standing next to a woman with Jesus on her tee-shirt, they were all there and armed. They had sticks and stones and eggs. They pelted them at anyone with the courage to walk to the front door of the bar. The police stopped people from rioting at the sight of gays, but they didn't stop or even discourage the throwing of weapons. There was cheering when some hapless drag queen was struck, there was jeering at someone trying simply to slip into the front door.

I felt physically sick. I felt that I was not a citizen of this country, of any country. I felt that I lived solely in the land of the different and the hidden. Straight people and their anger frightened me. Christian people and their condemnation hurt me. I picked up and moved, emotionally, to the margins of our society.

It seemed there were few safe places. Families either misunderstood or outright condemned. Friends preferred the lie to the truth. Churches preached hate. Newspapers called names. It was a very, very difficult time. What alliances we made were made carefully, fearfully.

I worked in an industry, human services, where gay people were particularly not welcomed. Even a hint of the rumour of homosexuality would cause panic, fear of exposure, of loss of job, of income, of one's chosen path. I did what we all did back then, I learned to speak of my life without mentioning gender of others, I learned to hold back the truth while not out right lying, I would attend parties with a female friend on my arm. I passed. But passing was killing me.

We were all having lunch. I was working as a behaviour therapist and one of my co-workers, in front of my boss, turned to me and asked, 'So are you a queer.' My heart leapt from my chest. My mouth dried. I had worked so hard to get where I was in that job. I had worked as a vocational instructor, a residential counselor and a classroom assistant, all with an eye to one day doing consultation. I had only seconds to make the decision. I decided to lie, I openned my mouth and was shocked to hear myself say, 'Yes, I am.'

From that day forth I have never again pretended to be someone I'm not, who and what I am isn't much, but at least it's authentic. By then I was doing training for a variety of agencies. The word got out and suddenly I was no longer invited to train, no longer invited to consult. But the world was calling and what I lost in Ontario I gained in the rest of Canada, eventually the United States and finally the world. I didn't know it would be ok, but I had to live with the fact that I might lose all in gaining self respect.

During the first wave of deinstitutionalization we worked with a number of men and women with intellectual disabilities who were lesbian or gay. I worked with one of the local agencies to develop a protocol of welcome rather than the practice of punishment. We ran what may have been for it's time the very first series of trainings aimed at decreasing homophobia in staff of a Community Living agency. I wrote and published the very first journal article in the world about supporting lesbians and gays with intellectual disabilities. I lost more work. I got hate mail. Friends found me too controversial to acknowledge.

At one of the big Ontario conferences regarding intellectual disabilities, I did my very first presentation, and maybe the first in the world, on supporting people with intellectual disabilities who are LGBT. I asked my gay friends in human services to come and support me. They all promised they would. None did, they were too afraid. I have never been more frightened than I was that day standing up and giving that presenation. I got through it through grit, determination, and yes, it may surprise you, prayer.

The world has changed greatly. But still not enough. I know from my travels that I still meet lesbians and gays who are terrified to come out in their organizations for fear of reprisals. I know that fear, it chills me still. It was less than a year ago that someone threatened to start a boycott of my blog unless I agreed to take out all gay content and no longer mention Joe and my relationship with him. That threat, though it was empty, brought back to mind that night, that horrible night were rocks were thrown while cops laughed.

You all know that I believe that it's possible to create safe places for people with disabilities. You know the journey we have been on here at Vita for the last three years. Well, I want you to know that it is my hope and passion that in creating a safe place for our members, we also create a safe place for ourselves. A place where 'welcome' is in the air. Where we all work together towards establishing a mind with absence of prejudice and a heart full of pride.

To support people with disabilites, we know, is to support diversity. Disability touches every race, every faith, every sexuality ... to accept those we serve we are asked paradoxically to accept ourselves. The diversity within scares us more than that without. We are challenged to rise above ourselves, and thus see ourselves and God sees us. Whole, finished, perfect.

Yes, we are gifted with the job of making the world a better place for others. We are gifted with the discovery that every victory against prejudice is a victory for us all. We are gifted with the opportunity to come to know, respect and value difference. We are gifted with each other.

On this pride day I tell you I am proud to work here with you. I am proud of what we have accomplished, not only as an agency but as a movement. I am proud that who I am and who you are ... our differences, our similarities, our joint strengths and our shared weaknesses ... have managed to craft a freer province and a more just world.

I want to thank each of you who has made me welcome. Who wave at me in the parking lot, who come to the trainings I offer, who drop by my office for a chat - thank you, I value each of those interactions. I also want to thank you all for making Joe, the guy who pushes me around and who makes it possible for me to do what I do, recognized and welcomed. I do not understand all of your beliefs and you do not understand all of mine, I know that. I like that. What matters is that lack of understanding does not lead to rudderless fear and rampant hatred.

We continue onwards towards safety for all and welcome for everyone. There is comfort in knowing that here at Vita we believe that 'All means all'. And that I am part of 'all' and so are you.

Saturday, June 27, 2009


I always start polite and go from there.

We were overnighting in a hotel and, unusually for us, we were going out to the theatre for a seven o'clock showing. We were chatting excitedly because we were going to a live performance of Phedre starring Helen Mirren which was being broadcast from London. I mean, really, how cool is that. I had just pulled up to the elevator doors when two large, burly, men who were clearly drunk came crashing down the hallway.

I tensed. I don't have a great history with drunks. They tend to find themselves very funny, when their not. The tend to presume, wrongly, that I'm their 'bud'. They started by making jokes about how much space I was going to take up in the elevator. I'll pause for a moment for you all to wipe the tears off your face, that's funny that


ok, back. I smile, I mean really I don't care all that much. I didn't like how by sitting it put me in a position of inequality and they breathed down vapours of alcohol and cigarettes on me. Finally, in answer to desperate unspoken prayer, the elevator doors openned. I asked them to step in first. I mean I've done this before and it's way easier for them to get in, then me. My chair is long, they won't have to crawl over me to get in.

They absolutley frigging insisted that I get in first. As I began to push one of them grabbed the handles on the bar of my chair. I quietly and politely said, 'Please don't touch my chair.' He laughed and said, 'I'm just helping you, 'bud'. (You thought I was kidding earlier didn't you?) Now he used some force. I'm got strong hands and I held tight so the chair would not move and said, with clear anger, 'I SAID, DON'T TOUCH MY CHAIR'. He let go and I pushed in.

Predictably they had to near crawl over me to get in. I said, by way of explanation, 'I don't like being grabbed by strangers.' The offender said, 'I didn't grab you I grabbed the chair.' I said, 'The chair is part of me.' The other guy seeing the offender really, really upset changed the subject and I chatted with a friendly tone. I didn't feel friendly but I didn't feel like getting punched out either.

When the doors openned, I pulled out first, they near leapt out and headed to the door. Joe, who had looked like he had ridden in the elevator with a ticking bomb, took hold of the back and began to help me out. I heard the offendeer say, 'What are cripples for if you can't help them out?'

Let me say that again, 'What are cripples for if you can't help them out.'

So, that's why there's disability. So drunks can feel better about themselves by giving a helping hand. Ah, what a wonderful intellegent design, making cripples so that normal people get a chance to be charitable.

Finally, a purpose.

Friday, June 26, 2009


It's been a wistful day.

There's a problem with working with people so much younger than yourself. To wit, they are younger that you. They have so much more life ahead of them, so many paths yet to choose, so may options not yet closed. As such sometimes they decide to talk to someone older (that would be me for those not following) and twice today two youngish people came in to talk to me about their hopes for their future.

Each has a very specific set of goals. Each has direction. I think that they wanted, most of all, just to say out loud what they want to do and acheive. I love these moments in that I feel so honoured to be allowed the opportunity to listen and encourage. It's very cool to be seen as open enough and kind enough to create the safety necessary for dreaming.

Yet, at the same time, it makes me aware that I'm at a very different place in my life. True there are still options but you and I both know that they are different. For better or worse I've made my decisions and trod my path. The excitement of not knowing the better way and choosing anyways is still fresh in my mind.

I am happy with my life and where I have gone. I am happy to go where I have yet to go. I know all that. Even so I still hold fast to those early dreams I had for myself, unrealized, improbable, wonderful dreams. They are stored in a corner of my heart with other precious things. I am happy, but that doesn't matter, because every now and then I sit back and wonder about the roads I never took ...

Thursday, June 25, 2009

Happy Pills

I saw them and immediately picked them up. Perhaps you remember them too. You know the Dad's Oatmeal cookies that come wrapped up two at a time in clear plastic. The really crunchy dry cookies that break in half with a snap, that crunch in your mouch with satisfying resistance, that taste like childhood - those.

I picked up a package immediately. Joe loves these cookies. So do I. But we don't have cookies around the house with me being diabetic and all. I know, I know, one cookie every now and then is fine but PLEASE, if I could actually eat only one cookie every now and then I wouldn't be diabetic now would I! Anyways, I saw the wee package and bought it.

It sat at my desk and made eyes at me all day. But I left it there. It was a little gift for Joe and I intended on giving it to him when he arrived to pick me up from work. We are nearing our anniversary and I've been thinking about something nice to do for Joe, something to let him know how I feel ... I've not thought of the perfect thing yet but there are still a few days.

Joe arrived and I noticed him notice the little package on my desk, his eyes kept tracking back to the lovely duo and I paid him no heed. Just before leaving I picked them up and said, 'I got these for you.'

Man, you should have seen the joy on his face. He stuffed them in his pocket and said gleefully that he'd eat them in the car on the way home. I swear he bounced out of the office. All at the price of 50 cents and he was happy.

I've resolved to stop thinking that I've got to always come up with the grand plan, the big thing and the absolute right wrapping paper. That I had to wait until the perfect moment, the right time ... No, instead, I'm going to concentrate on doing a bunch of little things whenever they occur to me. Because it's always the right time.

For cookies.

The ones that taste of thoughtfulness.

Wednesday, June 24, 2009

Philosophy From Behind The Wheel

I was strapped down and buckled in. We pulled out of the driveway and headed up to the office. I hadn't used the WheelTrans system for a while so it felt odd to be in the van and tied down. The driver informed me that we had lots of time because his other pick up had cancelled, I was going to get a non-stop ride. We headed up Avenue Road and then he took a turn onto St. Clair which surprised me. I've ridden with many drivers but have never turned onto that street. We drove only a couple of blocks and he turned north again on a sidestreet that I'd never been on before.

The road was completely clear of traffic. It was a beautiful sunny morning and the light dappled green through the trees. The houses were spectacular and the gardens lovely. I mentioned that I'd never been on that street before. He said, 'I like riding one street over from the one that busy people travel.' Then we fell into a relaxed conversation about various houses, we imagined aloud living in places that magnificent.

Suddenly we were on Eglinton and we drove the rest of the way like I'd done a thousand times before. I arrived at work in plenty of time and thanked him for a lovely ride.

Later on in the day I had a staff come to me with a question and a concern. I was busy doing something that needed to be done. But I decided to ride one street over from the busy one ... and took the time to listen and, in the end, learn.

Even later, I had just put the phone down after having written a list of tasks that I need to get done this week and was looking for a file to attach to an email. A woman with a disability popped in to say hello. I almost gave her the 'I'm busy' smile but I decided to make my way down the street one over from the one that busy people travel. Again, I listened, I learned, I even laughed.

Oddly, he got me to work faster.

Even more oddly, I got more work done.

Perhaps there is a deep philosophy to be found in driving a cab and riding one street over.

Tuesday, June 23, 2009

Taking Chances

The arrival of the snack cart is one of the high points of my day. When it pulled into my office I greeted the woman who, knowing my taste, was pointing out where my favourite treats lay. I hadn't seen her since we both attended the wedding of the Behaviour Therapist who works for Vita. She had sat with her friends a couple rows ahead of where we sat.

They had chosen not to go to the reception and as we all stood in front of the church watching the bride and groom get into a white carriage being pulled by some very spritely horses, I'd asked her where they were going for supper and there was a huge debate between McDonald's and Swiss Chalet. They were all dressed to the nine's and I grinned just picturing them around a McDonald's table.

So when she came in I wanted to know where they went and she told me that they had decided to go more upscale so they ate at Milestones. Then we chatted about the wedding, the bride, the beautiful day ... the stuff that people who have shared an experience talk about. She really got into our conversation and stood with her hip up against the cart as we talked and laughed together. Our tone was gossipy, we didn't like the priest, our tone was amiable, we really loved the bride's dress, it was just a nice chat.

We'd talked many times before, pretty much every time the cart comes into my office I stop and have a little chat. I like the break and I like to keep up with the people who are hawking the treats. But this time it was different. Very different. We'd shared something as people and we related to each other as such.

It's amazing how a common experience can level heirarchy in ways that nothing else can. It's amazing how a few minutes out of regular roles and into regular skins - changes people and warms interactions. It was so nice to just be two people chatting. My status as a staff, my ability with words, the bricks of which heirarchies are built, were out of the way.

And suddenly. Right before my eyes. I was speaking to a woman who'd I'd spoken to a thousand times yet never before - a confident, funny, lovely woman. A woman I'd never met before.

I said to her, 'It was nice to have a chance to talk.'

She smiled, knowing. And left.

She knew that we'd often had the chance to talk, I'd just never taken it.

Monday, June 22, 2009

Hotter Than ...

From a couple of days ago: We realized just before going to the cashier that we'd forgotten the eggs. Joe looked at me and said, 'Would you mind running over and grabbing the eggs, it'll be faster?' I nodded and then quickly turned my chair around and motored over to get the eggs. It felt wonderful being the one doing something to lessen the load. It felt wonderful to be independent enough to easily fulfill an everyday request. Simply, it feels good to be the one helping, it changes status and raises confidence.

I wonder if she knew that.

We were having a tea at our favourite outdoor cafe here in downtown. There's very little room and they pack in too many tables. I pulled into one of the tables on the outer rim of the cluster. I was in position to watch people walk down Yonge Street, an activity that can keep me entertained for hours on end. Joe had placed the teas beside me and plopped into a chair himself. We were unwinding on an unexpectedly beautiful day.

I saw the two of them coming, eyeing a table near us, the only one presently open. I could see near desperation in both faces. They were carrying parcels and packages, they were near stumbling as they rushed. I tried to signal that I'd hold the table for them but they didn't see me try to reassure them. They arrived and both fell into their seats.

They were clearly mother and daughter. They were clearly exhausted. As I heard the daughter speak I heard the drawl of a cerebral palsy accent saying, 'I'll get us the coffees.' The mother simply said, 'OK, just don't kill anyone on the way back OK?' Her daughter flung forward with a laugh and then calming herself said, 'Don't worry, I'll just burn the assholes.' Now mother laughed. They both turned as they heard Joe laugh - he can't stop himself. We all smiled at each other. I think me in my wheelchair moved us all into an odd kind of 'band of brothers'.

The daughter got up and walked relatively smoothly to the door of the cafe and then in. We didn't fall into conversation with mother as she busied herself with organizing the packages which were in a jumble at her feet. I watched at the door and then realized that the whole of the terrace of tables were turned and watching the door. Like we were waiting for a blessing from the Pope, or for the Queen to appear on her balcony. Everytime the door opened, the group tensed waiting for the woman to arrive with hot coffees for her table.

In a hideous moment I felt a bit like we were at a freak show, all waiting for the fat lady to dance, or the stong man to strong. But then I noticed that the faces weren't curious, they were in an odd way hopeful, and an odder way respectful - none was gawking, or openly staring, or even mildly mocking. When she appeared carrying the coffee's she was amazingly steady and walked as if she knew that people were watching and that people had watched for years and years. But more than that it was as if she walked with an odd bit of pride, a 'take that' attitude of accomplishment.

She placed the coffee beside her mother and at her place. Then she sat down. Mother seemed to relax just a little bit, like it might have been hard for her to let go of the helping role and just wait for her daughter to be the one who served. Like it was hard to ask, and harder to recieve. The daughter took a sip and said, 'Know what's hotter than this coffee?' pause 'The guy who served it,' and the two of them were off talking, always mother and daughter, but often, a little, like friends.

Sunday, June 21, 2009

Illness By The Numbers

I am feeling much better this morning. The 'flu' (the doctor said that people called what I had the flu when in fact it was not the flu - he said this with some distain but for the life of me, in my mind I've suffered from the flu) is taking its course and now a few days later I'm feeling much much improved. I've had several days rest and several days of being taken care of. Though my illness has inconvenienced others, to a one I have been met with kindness.

So, about illness ... here's 10 good things about getting sick -

1) manditory time off, you don't work because you don't feel like working, you rest because you feel like resting

2) no need for critical self evaluation, people get sick, you are people

3) being asked, with real concern, how are you?

4) naps

5) snuggly blankets, couch time, hot tea, good paperbacks

6) knowing other people are at work while you are at home

7) looking at the computer and thinking ... nah

8) spending an entire day in a housecoat, a magical housecoat, with no thought of getting dressed

9) reading get well emails from friends

10) looking forward to getting back to a life you needed a break from to appreciate

Here's 3 of the worst things about having what people call the flu ...

1) knowing that something horrible is going to end up on the floor no matter which you choose, bend or sit

2) having the runs without being able to run

3) mistrusting farts

Here's 2 of the most frustrating things about being sick ...

1) having time to play games on the computer but not feeling like playing games on the computer

2) spending two hours reading a book only to realize that you don't remember anything that you've read

Here's the 1 thing that people don't talk about regarding illness ....

1) you really can get up to get that cup of tea but it's way better having it brought to you

So, anyways, I'm feeling better.

Saturday, June 20, 2009

Stopping That Man

I believe that it's best to just tell the truth. I told the audience yesterday that I'd contracted a virus and was low energy for the presentation. I worked harder than I admit to keeping myself up and going for the day. The audience was kind and understood when I needed to quit 20 minutes shy of the scheduled time. (Although on a Friday, it didn't seem like much of a hardship to most.)

The day was full of conversations and a number of Rolling Around Readers came for a quick hello. It's great to meet those who read the blog - it keeps motivation up. I saw some old friends and caught up with them on how things are going. There were several self advocates there and I was thrilled that several had things to say during the day. One woman got up when I'd been asked a question about 'rights versus responsiblity and where does the need to instruct fit in there'. These are difficult questions, particularly given that I think many agencies are using the rubric of 'rights' as an excuse for what otherwise would legally be called 'neglect'.

Her question, intuitively, settled the debate. As always self advocates are much more reasoned than ever given credit for, much more subtle in their understanding than any IQ measure will ever capture. She got me out of a tough situation, rah her. There were several other self advocates there too. Two got up on stage to have their picture taken with me, they are going to email one to me so I can post it on the blog.

Anyways, this post isn't about the lecture, the kindness of the audience or the insight of self advocates. It's about what happened afterward. Joe and I were the last to leave as we (that would be Joe) had go pack all the stuff up in the car, gather all the evaluations sheets, ensure that nothing was left behind by us ore anyone else. I waited patiently while this was done.

When we arrived in the morning we were met by an elderly Italian gentleman who was strolling around the beautiful quadrangle. It was funny that, even though his gait was unsteady himself, he wanted to attempt to push me up a slight incline and into the building. He gave up with ready humour that wasn't cruel - quite a feat. He was there again as I was coming out of the building.

He waved at me, not in greeting but to stop, slow down. I did as bidden and he came over to me. He told me that he'd come by during the day and he'd sat out in the coffee area and listened to me talk. Joe had mentioned to me that the lecture was piped into that area, so I nodded. He said something kind about my story - telling. 'There were two girls here, they had ...' he struggled to remember what it was called. The two self advocates who'd had their picture taken with me both had Down Syndrome and both were vivacious and noticable, so I guessed, 'Down Syndrome?' He nodded 'Yes'.

He took a big handkerchief out of his pocked and mopped at suddenly watery eyes. 'I watched them, in there, and it really got to me. Seeing them here." Now he can't talk. I had all sorts of things rolling around in my head but he went somewhere different, 'That's what we went to war for you know. To stop that man from killing girls like that. To stop him from killing all sorts of people, but especially girls like that. Seeing them here today, it made me think of the men who died, that maybe it was all worth it.' He was completely choked up ... 'I'm sorry' he said, 'I've been thinking about the war a lot these days. I don't know why. Most days I wonder if it mattered that all those boys were lost. But then today ...' He mopped his eyes again and simply waved goodbye.

Friday, June 19, 2009


I cried and cried.

Now before I tell you more, understand that I get weepy when I get sick. Little things make me cry big tears. Add to that that I had just been told by my doctor that I had a name brand virus and would have to cancel travel for 7 to 10 days. We had a big trip lined up for Friday and I hated the idea of cancelling. I know people have a right to get sick, and I am 'people' but even so ...

Now to the tears.

On our way to the doctor's office we were driving through congested traffic. Downtown Toronto is under construction this spring and if you are going anywhere, you are going slowly. As we drove south I noticed a near block long hedge covered in small pink flowers. I don't have any idea of what kind of flowers they are, beyond ... um, pretty, pink.

But there, about two thirds the way down the block was one flower, a brilliant yellow. It stood out amoungst the thousands and thousands of pretty, pink, flowers. I don't know how it came to be yellow. I don't know if it knew as a child that it would grow up to be different. I don't know if the other pretty, pink flowers scorned it or admired it's individuality. All I knew was that it stood out, beautifully, against the dark green leaves.

We were driving very slowly so I had time to really look at the flower and for awhile it looked defiant, for another little while it looked lonely, and for the final little while it looked simply like a little yellow flower. I smiled thinking about how kind it was of God to make a yellow flower amongst the pink. It made the pink more beautiful. It made the surprise of yellow like a gift. It seemed very, very right to me.

On the way out of the doctors office, we were both relieved to know that time, rest and liquid would make me well again. We headed north and I wanted to point the yellow flower out again to Joe. I noticed that a gardener was out trimming the hedge and I panicked. Oh, God, No.

It was gone. Instead of nestling in amongst the green it was lying discarded on the ground amongst the other cuttings. I started to cry.

It took Joe by surprise. All I could do was point. He saw the place where the flower was, then the place where it lay, he just clenched his jaw and drove silently.

While I cried.

Wednesday, June 17, 2009

Watery Mouth And All


I'd done a day's consultation, gone to visit a friend in the hospital, read a few chapters in a new book, gone to sleep. It had been a fine day. At 11:30 I woke up and knew that I was really sick. Sick, sick. I managed to get back to sleep only after waking up Joe to ensure he knew I was sick. He was groggy and didn't seem to understand why this 'news' couldn't wait till morning .... MEN!

So I cancelled the day and came home. I talked with a friend in Ottawa on the phone who's suffering similar symptoms, he warned me that I would be spending time in intimate attachment to the toilet. I assured him that I didn't have that kind of ... oh, oh, gotta go.

With my blanky over me and my book beside me, I've spent the day on the couch, on the toilet, on the couch, on the toilet and am exceedingly blessed that I never confused one with the other. I'm off to see the doctor today, and therefore there will be no blog today.


Tuesday, June 16, 2009


It was the end of a work day. There was the usual pandemonium with people getting ready to leave, taxi's and other specialized transit arriving and picking up individuals and groups. Staff were tired. Days can be long meeting one need after another, even so goodbyes are said with good humour and warmth. Into one such setting walked a woman calling to pick up one of the individuals at the day programme. The staff, though tired, became alert. Taxi drivers become recognized after a while and this was a face she didn't know.

The woman explained that she was the new driver and was there ready to pick up and go. Sensing that something was wrong the staff checked and saw that the drivers car had no logo on it, now it was time to ask for identification. The driver simply pulled out a ragged piece of paper with the individual's home address on it.

Picking up the phone the staff called the transportation company. Realizing that the call was made the 'driver' slipped out of the building and into her car. The transportation company had no idea who this driver was and indeed a few minutes later the real driver arrived. The individual then left with the right driver and arrived home safely.

This story was waiting for me when I got home on Friday in an 'all staff' email on my Vita account. I had spent much time with the folks in Butler talking about creating safe places for people with disabiliites. I spoke about how giving staff the responsibility and the power to handle allegations has made a difference. Suddenly staff know that they can act without having to get permission from all level's of management. Instead of wasting time calling for approval, the staff simply called and, as an end result, protected via vigilence a person who could be quite vulnerable.

I write this blog today to alert all who care for people with disabilities to stay alert to dangerous our suspicious situations. I'm hoping this post flys around to all day programmes and agencies who use specialized transit (particularly here in Toronto ... who knows who she may try to pick up tomorrow). If this is some kind of dangerous scam, be alert to it.

I also write this blog to acknowledge the work of one wonderful, observant, motivated staff who did the right thing right away. Staff who work directly with people with disability often do not get the respect they deserve and as a result they often are not given the power to make decisions and take action. This just shows that respect for staff can lead to safety for those with disabilities.

All hail front line staff with eyes open.

All hail policies that give power to all.

All hail a safe arrival home.

Monday, June 15, 2009

Dance To The New Day!!!

Yesterday's post was supposed to be quite different. I had planned a week or so ago to write something more celebratory and commemorative than the one that I did on the wedding. But none of us control time and circumstance. I wanted to write what I wrote yesterday so I did.

Then it struck me, today is kind of special too ...

While yesterday was my 1000th post, this is my 1001 post on Rolling Around in My Head (Nee Chewing The Fat). It astonishes me that the blog ever reached this age. Long time readers know my intention was to write a blog for only a year. Well that deadline came and went without missing more than a day or two.

So in honour of this moment in my blog's history, I'm going to ask you to do one of four things for me today:

One: I'd like to know if any of you have a favourite post from the archives. I know which posts get the most comments but I'm not sure that those are necessarily the ones that people like the best. So, please, let me know if one sticks out in your memory.

Two: If you are a regular reader but have never commented, I'd ask you to think about just saying hello today. I won't ask for another 1000 days so it won't be a drain on you.

Three: Just for fun try slipping either the phrase 'rolling around in my head' AND 'chewing the fat' into your conversation today ... just a fun little thing to help me commemorate this occasion.

Four: Register for my lecture on Friday here in Toronto and come say hi! I've met a lot of readers over the last couple of weeks, it's been great.

In return I promise to try and keep up the daily posts - I've come to rely on writing this blog to help me understand my life and understand where I'm going. I've appreciated all the wonderful things I've learned from your comments and emails. I'm privileged to have been allowed into so many lives.

So, back tomorrow with something that's rolling around in my head ... some thing we can chew the fat about. See, easy.

Sunday, June 14, 2009


Complex emotions swirled through me, though trust me, bitterness wasn't one of them. I'm not sure I could find emoticons that would identify every one of the others. We went to the wedding of a woman I work with yesterday. She is someone I both like and admire, a fine person, a good heart, a blazing smile. Joe and I were both thrilled that our travel schedule allowed us to say 'yes' to the invite. We got home from our latest trip on Friday night, the wedding was at 3 the next day. As tired as we were we got ourselves scrubbed up and went.

We haven't been to a lot of weddings. Being gay over the last several decades made it such that weddings weren't really part of the lifestyle of our gay friends and we were usually not included in the guests lists of our hetero friends - where to seat us and how to explain us made it just to difficult. So, we didn't do weddings.

There was a time, when I was very young that I desperately wanted a wedding. I wanted to stand and proclaim how much I loved Joe and how much I believed in the relationship we had. But the idea of gay marriage, as we have seen, can bring the bigot out in even the most tender of people. The idea of our relationship was spat upon, the concept of our love was denigrated into sinfulness, the fact of 'us' simply angered otherwise sane people.

So, I thought about the long hard fight for the recognition of gay relationships ... I understood without equivocation that it was a fight for the recognition of our hearts and our souls. I thought about standing in Washington at a giant wedding ceremony and writing our names in chalk on pavement. No amount of rain, no accumulation of snow will ever entirely erase what we wrote there that day.

I pushed this aside. This wasn't a day for me to think about me. It was a day for me to celebrate the love of someone I care about. I watched her come in, beautiful in every way that it is possible to be, on her father's arm. I almost cried when I saw her father give her a quick, private kiss on her forehead. His blessing, his child, his farewell. It was lovely.

Two rows in front of me were a group of women with intellectual disabilities. They were there to celebrate as well. I saw them smile, beam, as the bride entered the room. One of them, a woman with an enormous presence and a hideous past, had a tear in the corner of her eye as she watched the bride slowly walk up the aisle. I wondered, then, if she too had conflicting feelings.

I was no where near the first voice, but I was one of the loudest voices in the fight for the right of people with disabilities to have relationships. You see, I knew it was a fight for the recognition of heart and soul. I remember my early publications being called 'filth' and 'pornography' just because I suggested that people with intellectual disabilities had the same right to love, sex and relationships.

Those were the days where people with disabilities did not marry. Did not love openly. Those were the times where we took the scalpel to the genitals of men and women with disabilities leaving them bloodied and sterile. Those were the days where we punished loving with electric shock and forced separation. Those were the days where men were locked in wards long long away from women who were similarly caged.

As the ceremony progressed I watched her. The one who spent her life down at the end of a long and lonely corridor. The one who spent her life waiting for change. The one who is old now. Alone still. Her feet walked miles of corridors but will never, like mine, walk down an aisle.

So here we are, she and me. People who lived through the battle won. We look at this fresh love from old eyes. We look at this gathering of family from the perspective of outsiders. She and me. Me and she. But then ...

The priest called for us all to give each other the sign of peace, she turned around to me, tears glittering in her eyes. She shoved her hand out and called, 'David!' I took her hand in mine and said 'Peace' she smiled and said, 'You too'. She is in a way part of the family of those considered not good enough, part of the geneology of those considered sinful and damaged, her history and mine brought us here together. Invited by a bride with a huge, huge heart.

Saturday, June 13, 2009

a brief stop

After about an hour in the car, I asked Joe if we could pull of and get a cup of tea from a cafe. I saw, in the set of Joe's jaw, that he really didn't want to stop. I understood, I wanted to get home too, but I wanted to stop just for a minute. We pulled off the interstate and found a small cafe. Joe grabbed my sippy cup to go get it filled and I asked if he'd mind me getting out of the car. A tight nod of the head said, 'Sure, alright, let's just move in here' but his voice said, 'Of course.'

We went in and there was a small line up. Over in the corner by the front window was a smallish little birthday party happening. Everyone was in bright colours and a birthday cake was delivered to the table while we waited in line. The table was surrounded by little girls, all about three or four. They were dressed up and it seemed like 'tea party' was the theme of the event. I gave my order when I got to the counter and then paid and pulled over the side to wait.

As I waited the birthday girl arrived. There was a huge cheer and little hands covered a little mouth open in real shock. My eyes widened as I saw a beautiful little girl with Down Syndrome dash to a party with friends. I nudged Joe but he was already watching. He, too, with tears in his eyes. My attention was called back to pick up my tea and I noticed that everyone in the store was grinning at the delight of a little girl.

I asked Joe to hold my tea as I rolled over to the table. 'There's something I'd like to see' I whispered to him. We sat, and watched along with everyone else, as the candles were lit. She screwed up her face and made a big wish, and then blew out the candles - with a little help of several friends who couldn't resist.

I don't need to know what she wished for, she may not know it yet but it's already been granted.

Happy birthday little girl, many more parties, many more friends, many more wishes, granted.

Friday, June 12, 2009

Couch Potato Wannabe

It is the morning of the last day. The folks at Butler have made me feel welcome and the trainings have gone well. I really do care about those things. But right now I really care about going home.

Home has always mattered to me but now, I'm imagining the simple joy of sitting on my couch. Becoming disabled is an individual, never universal experence. My disability takes this and gives that. My disability is unique to my experience. I cringe a little when I hear people talk about 'the needs of disabled people' because I'm not sure that we are all covered by a broad statement.

Anyways, I've wandered away from my point. I get to sit on my couch. For a couple weeks now, on this trip, I have sat in my wheelchair, sat in the car, or laid down on the bed. I haven't sat on a couch since the moment I left home. Couches are universally too low for me. Accessible hotel rooms want you to have space to move around in the chair, and means to poop in the toilet. Many also make sure the sink is 'roll upable to' and that the shower is either roll in or barred like Folsom Prison. I thank them for all this.

I cannot and do not expect them to be able to match the individual needs of every disabled person. So I end up looking at Joe longingly as he plops down on the couch and watches television. I perch in my wheelchair, where I've been sitting all day, wishing just for a moment to curl up on my couch at home. I'm gonna do that tonight. I can bring my wonderful memories from the trip and sort them out as I curled on the corner of my couch on blocks.

Canada has a designer show 'Steven and Chris' and I wrote them to ask for decorating advice for what you do when you have a couch up on blocks in your front room. Their website guarentees an response to every email. I didn't get a response, I think they thought I was making it up.

But now I don't care if you can see the huge, tall, concrete bricks that hold my couch up, just notice in about 12 hours - I'll be on it.

Thursday, June 11, 2009


I am here in Butler to do a series of presentations starting with a Train the Trainer session on abuse prevention. Typically I meet with the newbie trainers for about an hour and then run a class for 15 to 20 people with disabilities, then take questions from the trainers afterwards. It may not seem like much but it's a simple class to learn. Powerful lessons can be taught with a sense of fun and opportunities to practice.

Well, we hit a snag when only 2 people with disabilities showed. A decision had to be made so we asked them if it would be ok if I just taught it with them and all the staff joining in to do the activities and role plays. They were generous and said sure. I felt a wee bit silly at first but got into teaching and forgot to be nervous. I noted and hoped all the new trainers noticed that even though there were only two people with disabilities there, they were laughing, participating and learning.

We got to the discussion of the four basic feelings and something wonderful happened. One of the two spoke deeply and with great feeling about what frightened him. He was well spoken, his words well chosen and he spoke with an intense honesty that gripped us all. What he said connected with everyone in the room. He spoke of a fear that is very 'modern' and completely timeless at the same time. In that instant I think we were all glad to be there, all glad to be learning together from each other and from him in particular. It mattered that the session had been run.

It amazes me what can happen when people with disabilities are given time, opportuntity and THE RIGHT QUESTION. Too often our questions of people with disabilities are 'white blouse or blue sweater' 'chocolate milk or diet soda' 'everybody loves raymond or two and a half men'. Choices are wonderful but they are conversation stoppers not interaction starters. Here, today, a man had the opportunity to answer a question he'd clearly been waiting to answer, 'What things scare you?' Questions we ask of people we are interested in. Questions we ask of people who matter to us. Questions we ask when we value the answer.

For a moment he gave me a real hope, a hope that one day someone will ask the right question about disability and someone, somewhere, will finally hear the right answer.

Wednesday, June 10, 2009

Would That Be Herman ...

We saw it at exactly the right time. I had to pee like a um guy who is over 50 and has finished two cups of tea. OK sometimes similies fail me. We'd pulled off to get breakfast, to fill the car's tank and drain our own. The rain was pelting down so hard that we were sure animials were pairing up two by two and checking their tickets for the boat.

It was a Hess gas station. I don't know this company at all, it must be one that serves a particular geographic region of the States. We choose to go to the bathroom first, well we didn't really choose - some needs just take themselves to the head of the line. The gas station looked brand new. We pulled up into the disabled space and remarked at how well placed the parking spot was. (There are gas stations and rest stops on the I-90 that has disabled parking much further away than typical parking. There are stores that cut curbs with bitterness and have them almost impassibly steep or with odd twists in them. Over time you remark at things like well planned disabled parking and nicely designed curbs. Trust me.)

So we go into Hess and they manage it to look jam packed with cool stuff. But, and it's a big but, the aisle are wide enough for a wheelchair and the bathroom is designed with wheelchairs in mind. I could get in and park, transfer easily to the tall toilet, just the grab bars to get up, roll over to the sink, wash. It wasn't wildly larger than other bathrooms, just really well designed. Kind of like they'd asked someone in a wheelchair to describe the perfect gas station bathroom.

I came out of the bathroom and said, 'Let's buy some of this stuff. We shopped a bit then filled up, then left.' I wanted to spend a bit of money there, I wanted them to see a disabled guy in their store SPENDING MONEY. Just in case someone thought it was a waste to create a space for us, let them think again as my money crosses their hands.

There are those who yammer on and on about diversity and welcome. Well give me the quiet commitment of a gas station with great blue badge parking, a well cut curb and a bathroom that has it all.

Mr or Ms Hess, if you are out there anywhere, props from me.

Tuesday, June 09, 2009

You've Got Mail

One of my favourite magazines has just had it's 25th anniversary and they did something kind of cool. They asked various celebrities to write a letter. Not just a letter but advice from 'adult me' to 'teenaged me'. Some of the letters were wonderfully funny, some much more thoughtful. The idea stayed with me and I thought I'd like to give it a try. I'm hoping it will turn into a 'thing', I'd like to read yours to you ...

Dear Dave,

I thought about this letter to you for a long time. At first I wanted to give you advice or warn you away from people, situations or hardships. But then I decided that you wouldn't want that, that it wouldn't be good for me either. For better or worse, Dave, the path you will negotate will be the path you walk. But realize that every step into the future is a step away from childhood pain and childish fear. Every step you take into the future is a kind of 'claiming'.

You need to be a little kinder to yourself in your thoughts and a little harder on yourself in your expectations. You give up too soon too often, you have trouble believing in yourself. You give away what you must keep and keep what you must give away. This sounds like a fortune cookie but it's true and you'll know it.

Take a little more pleasure in your accomplishments. Acknowledge and celebrate a little bit more along the way. You don't laugh enough. Joe's constant humour annoys you now, but do you realize it's because you envy easy laughter? Smile a bit more, but don't develop complacency. You discovered your mission early, it will take you through a rich and demanding life - follow where it leads, do what needs to be done even if no one else is doing it. Don't shut up. Don't give up. Don't wimp out. You see yourself as a coward. You are wrong.

When it's time for the wheelchair, yes you will be in a wheelchair, sit down and relax. Be honest you never liked walking much and you've never willingly gone on a hike, so sit down and have a hot dog while the world walks by. Pay attention to what you see, listen to what you hear, concentrate on what matters.

Best of all dear boy, you'll be ok. I'm not going to give away the end of the story for you, I don't know it yet myself and besides if you know who's here beside me, you may take him for granted in your present. Be well boy. See ya in about 40 years.




Monday, June 08, 2009

My Mouth

Very Coarse Language in Post:

So, we'd had quite the day, making package and parcel jokes. Stamp out intolerance. After the movie Joe said, 'That's a wrap.' We saw a sign in a store that said, 'Leave oversized parcels here' and I said to Joe, 'Don't you fucking dare!' We had to stop and passersby must have thought we were drunk. Absolutely drunk.

At the end of the day we stopped at a pub near the hotel. Joe had a pint and I had a tea. There were a group of boys (they thought themselves men) at the table next. As things happen in neighbourhood pubs we all started chatting. Apparently they were graduates and were out having an afternoon drink before they all scattered to differing events. They didn't look anywhere near old enough for the drinks in their hands but, I'm at the age where police officers look four days older than sperm.

Anyways, one of the guys looked at me with a great deal of seriousness and asked if he could ask a question. I braced myself and said, 'Sure, why not?' He told me that he'd heard that people with sensory disabilities (he didn't say sensory disabilities, he said, 'fucked up eyes and ears and shit' ... ah the education system) got 'repaid' he said 'repaid' by having other senses increase. Like smell and hearing and ... shit.

'Yes,' I said, knowing where this was going.

'Well, is the same true for you know people with ...' he had the grace to pause, and I filled in 'fucked up legs?' He nodded eagerly. The others were leaning in to listen. Joe had a horrified look on his face that said, 'Leave it alone, LEAVE IT THE FUCK ALONE.'

I nodded seriously and leaned in to increase the intimacy of the moment. "When your legs don't work, it increases the feeling in your ...' and here I added a couple of lewd hip thrusts. They gasped. 'Is that for real man?' they asked. I nodded and said, 'yeah, it's about how the nerve endings work.' Well that sounded scientific enough for them, and besides the mere idea had them all looking like their testosterone was going to have them dive into empty swimming pools just to experience the power of crip sex.

Do the senses of people with disabilities increase because of the disability. You bet, it gives us the wildest sense of humour.

Sunday, June 07, 2009

Joe's Blunder

I can tell by a slight change in the set of his shoulders. Joe is angry, probably really angry, though he is still smiling. I can't hear the conversation, but I can see his face and the back of the smallish woman who is gesticulating quite wildly as she speaks. He says something, I think to try and stem the flow, and then falls silent and unsmiling as he listens to her.

I am in the car. We were heading out and Joe was about to load the chair into the back seat. I asked why he wasn't just putting it in the trunk which is much easier. He tells me that there are a couple of boxes of books cluttering up the trunk space. I suggest loading the boxes onto the wheelchair and stacking the boxes in the hotel room. Thus he'd have several days of just loading the chair into the trunk. He agrees and he was on his way back when stopped by this woman. The conversation was probably over in a few moments but it felt longer as I was curious as to what she was saying that would wipe the laugh out of Joe's interaction with her (anyone who knows Joe, knows with I mean).

Finally she is done and he is on his way to the car with a grim look on his face. He puts the chair into the trunk and then slides behind the wheel of the car and I know better than to ask. He backs out and in the driveway he says, 'Did you see the woman I was talking with?' I joked that it seemed that he wasn't doing much of the talking. He agreed.

The woman had stopped him and told him that she thought it inappropriate and cruel to use my wheelchair to haul boxes. That in doing so he was comparing me to baggage and packages. That he was dehumanizing me. That my wheelchair was part of who I was ... his actions were tantamount to insulting my very being, equating me with a parcel.

'Seriously?' I ask.

He nodded. I joked that I am kind of a 'special delivery' kind of person and Joe remaked, 'Who could pay the postage for that?' In seconds we were howling ...

Part Two of this Post Comes Tomorrow

Saturday, June 06, 2009

To You

It's early Saturday morning. I've been up reading for about an hour, Joe is still in bed, book in hand. I love these quiet mornings. At home, in a hotel, it doesn't matter - the quiet of a day without expectations is simply lovely.

I got up yesterday morning facing a day long lecture, another one, and I just didn't much feel like doing it. We breakfasted in silence and then drove quietly to the college where I was to spend the day. There was already bustle and activity when we arrived but we met with our contact who greeted us warmly. It's an older building and the way down to the floor of the lecture hall was built during a time without imagination. A time where it was never concieved that someone in a wheelchair would ever take the podium. But I am evidence of change and we made our way down a service elevator and along a service hallway and into the room.

I pulled my notes out and began to organize as the room filled. I was doing the day differently than I'd ever done it before. Casting away some old stories, adding some new and twisting the topic just a little to the left. As a result there was a sea of papers in front of me with scratched notes that would lead me through the topic at hand. I've lectured in MA a fair bit and when I looked up I recognized some faces and recieved a few welcoming smiles. Energy was starting to enter by way of waves of nerves. There were a lot of people there.

Speakers know that it's all about the audience. All about others willingness to take the journey with you. And it's true. The audience was hot. I found my self saying things I've never said before and the hall would explode into laughter or disolve into tears. It was a wonderful experience. When it was over it was gratifying to have a couple of hundred people rise to their feet and applaud.

I was shuffling my papers getting them ready to be packed up. I wanted to be careful, as I said this was a new way to approach the topic, I didn't want to lose what was done. I knew I would take part of the weekend to jot down the flow of stories and points so that I could do this again. I want to do it again. Then someone was standing in front of me. I looked up and smiled. She seemed a bit nervous but began by telling me that she had seen me lecture many times over the years. I thanked her, nervous of what was to come.

"I wonder if you know," she said, "how much your own disability is now informing your lectures. Last time I saw you, you were in a wheelchair but the lecture was just 'Dave in a chair'. That's changed. Now you are allowing your experience as a person with a disability into the lecture. Yes, this lecture was funny, funnier than I have words for, but it was also the most profound lecture on disability I have ever attended. Thank you for allowing disability to teach you and reach us."

It was, as you can see, a wonderful comment. I thought about it a lot and I realize that I have been approaching my work differently these past months and years since I became disabled. With every new experience of discrimination or inclusion, I understand something different. With every new assessment by some professional of some kind, I feel something different. And yes, these experiences make a difference. I believe that 'Rolling Around in My Head' has been part of this process for me. Having a space to come to to talk about my disability, my place in the world, has been an incredible priviledge. In fact all the new stories, that's all ... have been told here first.

Only a couple of days ago my visitor count topped 300,000. I wanted to say something then, but didn't know what. But after that compliment, I wanted to pass it along to you. To those who come here to read and in doing so encourage me to write, thank you. To those of you who comment, either to reinforce or to challenge, a special thank you. I believe my life as a man with a disability has been enriched by taking time to think about what is happening to me, to allow myself to become informed, not embittered, by the experiences of daily prejudice, to ensure that I note kindness and tolerence when it happens - all these things have resulted in a kind of 'knowing' that would not happen with an unexamined life.

So, here's to you. 200 hundred people stood and cheered me yesterday, I hope you can hear the echo, it belongs to you too.

Friday, June 05, 2009

Oh Oh

"Do you feel this?" Joe is looking at the back of my leg and I can see that he's prodding, but no, I don't feel anything. There is concern on his face which leads to panic on mine. "What's there, what are you seeing?" "You have a sore here," he said to the sound of my heart falling.

It's been a long time since I've had any kind of problem with sores or infections. I keep a close watch on my blood sugars and my skin is checked every other day. Neither Joe or I can figure where it came from or what it might mean. He reasures me it looks like just a normal kind of sore. But on me, in the form my diabetes takes there is no normal.

I carry around antibiotics, powerful ones, to use in case an infection begins when I'm away from home. I spent the whole evening trying to decide if 'now's the time' - but it doesn't feel the same as other times, so, I'm going to wait a day or two.

It's funny how time changes shape when you are worried about things like that. How a small sore or scratch, something you'd never notice as a kid - now becomes a threat to your wellbeing. Luckily I have a busy day today. I'll be highly distracted. Then, THEN, a weekend to relax and to watch and wait. Well, they call for a rainy weekend, we were wondering what to do and now we have a science project.

Thursday, June 04, 2009

Chair Woman

Joe and I were driving along a stretch of I 90 on our way to work in Massachusetts talking about the conference on Tuesday. I enjoyed hearing Joe's favourite moments, I liked his list a lot and even asked him to write them up in a blog and the silence which followed the request clearly indicated that hell would, indeed, have to freeze over. I was remembering a woman who we had lunch with who spoke with a heavy cerebral palsy accent. I remembered how much she worked to speak and how motivated she was to make connections with others.

Then I got a pinpricky feeling all over. I had wildly misunderstood her. From the start, I think I got it wrong. Let me tell you what happened.

During my keynote speech I told a story in which I became almost nakedly honest with how I am sometimes treated a wheelchair user. I wanted to convey, very very clearly, the depth of emotion that can happen when treated like out of place furniture, like something that needs to be yanked out of one place and into another. I've said this often, before, in my lectures in this story. But that day it was different because I saw a lot of people in my audience that I thought would truly understand what I was saying.

Later I met her in the entrance hallway, she said something kind to me about my talk but before she finished we were both whisked away by the crowds. Bumping into her later I noticed that she too was wearing wheelchair gloves and commented on hers, a lovely deep red. Still, even later, she sat at the same lunch table with me. I joked with her about drinking wine and she laughed. I saw again her struggle to speak to me, but there were too many people and not enough time.

Later still, nearing the end of the day, I was sitting by the booktable listening to Justin Hines' wonderful concert and she was pushed up to me by her staff. She said, 'I like you.' I was immediately embarrassed by her expression of affection. I am embarrassed by almost all expressions of affection. I made a silly joke, 'That's cause you drank too much wine at lunch.'

She was kind and laughed.

In the car that whole day played by my mind's eye in seconds and I knew immediately that I had misunderstood her and maybe even disrespected her. I don't think, now, that she was telling me that she had a crush on me, or that she fancied me, or anything even remotely similar. What was I thinking? I think that my talk had touched her in some real way, in some powerful way. I think she connected with my frustrations with being something pushed and pulled, with being something that sits in rather than is included in, with being something less. I think that my mouth that works quickly expressed what she with her mouth that works slowly has wanted to say for years.

I think I got her wrong.

Completely wrong.

Fortunately she lives recieving service from Vita. When I get back I'm going to invite her out for lunch. I'm going to apologize for my mind rushing way ahead of her ability to use words. Then, we're going to talk. Chairman to chairwoman, we're gonna talk. Because, and I'm sure of this she has much to say - all I have to do is make time. And that, I've got.

Wednesday, June 03, 2009

Both Sides Now

"It's going to be OK you know," Joe said.

He'd come into the office where I'd been screaming at the computer. The damned internet was unstable and I couldn't send an email that really needed sending, I couldn't write my blog, I couldn't do the stuff that distracts me when I'm stressed about presenting. So, I screamed, loudly, at the computer until it was time to shower, dress and leave.

We were headed up to the 'Both Sides Now' conference that Vita was hosting for self advocates and their staff. I had always wanted to be involved in hosting a conference like this one and had invested a lot of time and energy into helping with the planning and advertising. We had 180 people attending, some were flying in ... I wanted the day to go well. And there I was about 90 minutes before giving the keynote screaming at a machine. The day could only get better.

And it did.

I arrived to well organized chaos. There was a line up at the registration desk and people were milling around and chatting. I saw a number of people I knew and greeted some. I took my place on the stage and watched as slowly the hall filled with all sorts of people. I had my 'integrated' keynote all ready and when it was time to begin I hit the ground running. A pretty impressive feat for someone in a wheelchair. But it went as well as it could and we had lots of audience involvement, lots of applause, and I felt waves of support from the audience itself. Then, it was over - at least my part.

The sessions were all done by Vita staff who teach Anger Management, Self Esteem, Relationship Training and Abuse Prevention. They did sessions for self advocates and sessions for care providers. Every body got the same things. The idea was to teach people with disability skills and to teach staff how to foster and welcome those skills. There was a general feeling of good will throughout the building.

Impressions and Memories:

A care providing staff told me during a break that the two people with disabilities who had come with her were very nervous in going off to a morning session on their own. They were used to always being accompanied by staff. The afternoon session was very different, the had discovered that they could do something on their own and went off without reluctance. The staff had witnessed growth, in one day, with her own eyes.

Katie, one of the instructors, had looked at me through eyes of anxiety on the Friday before as we met as a team and discussed the flow of the day. She made jokes about letting other teams take up most of the presenting time. Then, there, at the conference she was talking proudly about how well the sessions went. I saw growth, right there in front of me.

At lunch I saw a man and a woman look across the table at each other with such love. Neither had language to express themselves. He reached out across the table, two fingers traveling through space towards her. She reached out her hand and slowly they made their way towards each other. When his fingers touched her hand he began to cry. They touched for as long as they could hold their hands up. It was one of the most profoundly loving moments I have ever seen.

Then, it was time for the afternoon keynote address. We had booked Justin Hines to bring his band and play his music and chat between songs. Justin is a guy with a physical disability, true, but more importantly he is a guy with an astonishing voice who writes amazing songs, with acutal lyrics. He sings like he was born to. After being introduced he whipped onto the stage in his power wheelchair and the music began. Slowly people took to the dance floor and there were those who danced in couples, there were those who danced alone. One man who had an awkward gait held on to the back of his wheelchair and, as if it were a partner, danced. Everynow and then he's stop and look at Justin, smile hugely, and then he'd dance again.

When the concert/talk was over Justin pulled his wheelchair up next to mine and began to sign copies of his new CD that had been released that day. A long line up formed and Justin took time with each and every person. He chatted with them, personalized each autograph, had his picture take with at least 20 self advocates. This guy is a fast rising star and yet he didn't leave until every single person, self advocate or care provider, who wanted a bit of his time got a bit of his time.

I saw the looks on the faces of the self advocates as they stood in line for an autograph. They looked Justin over, he too was disabled, he too knew what it was like to be seen as different, yet here he was both successful and kind. Learning takes many forms. Many forms.

On the ride home Joe said, "I had a terrific day, just a terrific day."

And you know, so did I.

Monday, June 01, 2009

Another Blatent Promotion

To Rolling Readers in Southern Ontario

I will be giving a day long lecture on June 19th in Toronto for Vita Community Living Services. This is the second of three lectures I'm doing in Toronto this year. It's called ...

Self-Awareness, Self Esteem and Self Advocacy: Creating New Ways Towards Quality Service

For a copy of the flyer or to register please call Rose Castronovo at 416-749-6234 x211 or email her at rcastronovo@vitacls.org .

If you are a regular reader of Rolling Around in My Head, please come and introduce yourself to both Joe and I.

Hope to see at least some of you there.

2:00 AM

We both woke up at 2:00 AM this morning. I was trying not to bother Joe, he was trying not to bother me. After a few minutes a tired voice said, 'Well, should be just turn on the lights and read for a bit.' We didn't turn on the lights but we did have a long talk about some important things.

Some times chats in the early morning dark are important to have. We live a busy life and even though we spend lots of time together - talk time, important talk time, can be put aside for a later that never comes. After about a half an hour we'd made some important decisions, mapped out a bit more clearly our expectations and goals for the next year or so, reassured each other that we intend to listen and talk (in that order) a little bit more often.

So, needless to say, we had a very slow day today. We went to see 'Easy Virtue' and laughed ourselves silly. We browsed in the bookstore and strolled a bit in the neighbourhood. It was a day to be gentle with each other and to lower expectations - we were tired. But the tired was made bearable in that decisions had been made and we both felt like we were on the same path.

Joe's bad knees were acting up so he limped a bit as he walked beside me in my wheelchair. People probably thought they were seeing two older men, but they were wrong they were seeing some very young plans.