What I Want

What I want. What I really, really want.

Is a trip without a story to tell.

What I want, is to check in, get on, get off, get car, go to hotel. All without drama. No one really likes travel. But I've found that as a disabled person I have to put up with the indignities of travel combined with the ignomy of receiving service from others. Needing help is bad enough, taking help is worse.

I've had so many good experiences but man I have had bad experiences. Right now, before getting in the car to go to the airport, all I can think of are the bad expereinces. They haunt me.

One of the guys I used to work with, a fellow with Down Syndrome, sometimes decided not to go out somewhere planned, he'd say, 'I don't feel like facing it today.' And I'd happily encourage him. How dim I was in those days. I so get it now. Some days, I just don't feel like facing the world. I can easily see how some become willing shut ins. I'm safe here in my place. I'm safe from the stares of strangers and the hostile help from those who are there to assist me.

So I hope my post tomorrow begins with, 'Nothing much happened on our trip to London ...'

Inside me there is a growing paranoia that needs to be quelled, not by medication, but by the experience of a nice trip full of nice people. I hope everyone who wears a uniform tomorrow also wears a smile. I hope that everyone charged with helping, does. I pray that every situation is dealt with kindly and the only turbulence be that which occurs in the air.

You know what I want?

I want experience to make a deposit in the trust account. I'd like to use it for moments that matter, like between me and God, not moments that don't like between me and the guy who pushes my chair at the airport - the one that thinks he's God.

Last Day

Drive, hotel, drive, hotel, drive, hotel ... this week has been a preview of what we are facing for the next four weeks in the United Kingdom. It may seem exhausting but I am looking forward to making the trip, giving the lectures and meeting the attendees. After a week where lack of mobility lead to a lack of participation, life feels fun and exciting again.

I noticed that my week in England begins on Tuesday with a session on abuse prevention for people with disabilities. A whole day of teaching people about boundaries, the power of 'no' and the surety of self. It's the perfect way to begin. A reminder of the purpose I have set for myself. Many of the self advocates who will attend will be known to me, I always look forward to seeing them, catching up with their lives.

You know when I began in service people with disabilities had lives, unchanging. They waited. In wards. In attics. In basements. They waited. To eat. To sleep. To die. There was never any news. Reports from year to year changed age, medication lists, health reports - but reflected lives without growth.

Now, as a testiment to the success of the thing called 'community living', people live lives that vary from day to day. From month the month. From year to year. They have jobs. Relationships. Children. Purpose. 'Hey Dave, guess what happened to me ...' begins a conversation with a thousand possible endings.

I intend on drinking up the air of excitment that comes with self advocate workshops and hope that it propels me, in mind and spirit, into productive training, prevocative conversations and powerful revelations. Here's to highways and hallways ... we pack tonight and fly tomorrow.

Let me remind you that some places that I stay in the UK do not have internet services so please expect some spotty posting over the next four weeks. I'll do what I can, when I can ... but the flesh may be willing but the wireless weak.

Up With Which I Will Not Put

We're busy getting ready for our trip and that means dealing with the pharmacy, getting all our meds (I'm kept alive by chemistry), and sorting that which comes from that which stays. Joe is in charge of almost all of this but I try in my little way to help. On our way to our hotel in Gravenhurst we stopped at a Shoppers Drug Mart because we realized we need to take several bottles of menthol Otrivin with us and in order to do that we had to buy several more bottles.

I can't imagine sleeping without my nightly shot of Otrivin or lecturing without a little spray. We went into the store and I wheeled myself around while Joe went in search of the miracle spray. I ended up at the top of one of the rows waiting for Joe to find the treasure. A fellow of about 23 entered the row and I noticed him, honestly, because of his gait. His knees were tucked together and he walked with quite a sway. His feet shuffled on the ground but he walked with confidence. True a little slower than the typical person, but then each step was weighted with more meaning than it is for most.

A couple came in behind him, well old enough to know how to behave, they were nearly 50. They were hurrying up and ended up behind the young man who hadn't noticed them, he was focused on getting up the aisle and over to the cash. They had to slow up a little bit. Annoyance crossed their faces, clearly they needed the several seconds that it would take to wait for him to clear the aisle. The man turned to his wife and mimed a shuffled walk, she laughed, covering her mouth almost to show that her husband was being incorrigible, hilarious but incorrigible.

I prayed.

'Don't look back.'

He didn't, he didn't see their annoyance, their mocking of him. But I'm sure he's seen it all before. I wonder if, when he struggled to learn to walk that they taught him how to balance on his feet and how to balance his personal achievement with the stares of ignorant assholes as he made his way through the world.

Step by step, we, the disabled must claim what is ours.

Push by push, we, the disabled must own our own space.

You know, just because there are assholes doesn't mean we have to constantly put up with their shit.

And an amen to that.

No Statue

Well, it was back at it yesterday. The wheelchair situation is under control, the awards ceremony is behind me, a full day awaited. We met for most of the day with a group up from PA who are interested in adopting Vita's model of Abuse Confrontation and goal of Abuse Elimination. We all spoke passionately such that hours passed with no break, only conversation, questions, answers, discussion and laughter. The time flew by and then we said our goodbyes and I headed for my desk.

I chatted with co-workers and then tried to tie up things the best that I could. I'm not back into the office for nearly 6 weeks as I'm lecturing this week throughout Southern Ontario then flying for the United Kingdom for a month of travel and lectures. It all seemed too much too fast.

And then I heard it.

A sound I love to hear.

The snack cart.

The woman pushing the cart looked in and saw me, she smiled and waved. I stopped doing what I was doing because, really, is there anything more important in the day than the snack cart. The woman is someone I've liked right since I first began working at Vita, she has one of those whiskey tenor voices that I enjoy just listening to. She always tries to sell me something new, she showed me some items and I told her that I wanted the usual. I picked up 3 packages of Dad's Oatmeal Cookies. They have a wonderful snap when you bite them and a lovely crunch when you chew them. They feel healthier than a chocolate bar, but aren't really. I always get one for Joe and one for me and one for the desk drawer.

So we chatted she and I about snacks as we dealt with change. The staff, wisely just stood in the background, even more wisely didn't try to hurry her along. I think he realized that we were both enjoying just chatting and spending a wee bit of time together. She knows I like her. I can feel that it matters to her that I care about her.

On her way out she said to her staff assistant, 'That's Dave. He's a good guy.'

Now that's an award that I can wrap both my head and my heart around.

Award

It happened just before we were to enter. I was lined up behind the other inductees into the Canadian Disability Hall of Fame waiting to enter the room. We were in the Royal York Hotel and the room was packed full of people waiting for the ceremony to start. We heard the MC announce that the 2009 inductees were about the enter the hall. Suddenly the whole room stood up and began to applaud. A chill ran down my spine.

I never expected this to happen. I never expected to enter a room full of people applauding my accomplishments. In fact I never expected to have accomplishments. I grew up with messages of failure from those in positons of power, those in the know, that I was a 'nothing' that I would amount to 'nothing' that 'everything' was beyond my grasp and 'nothing' was what I would settle with. I believed them. Of course I did. They all were adults, they had the magical power of knowing. My self concept began to embrace failure and expect disappointment. I experienced a deep sadness, and profound sense of loneliness. I sat outside that room looking at those people standing and applauding wishing, just for a moment, that I could talk to that lonely young man, the me before. Reassure him that it would be ok. More than ok.

I rode in and couldn't look at anyone in the face, because I didn't know what to do with mine. Finally I pulled into the table where I was sitting with Joe and Manuela, my two guests. Gary and Jill Taylor, two fellow inductees, along with Mrs. Healey, wife of the late inductee Jeff Healey who was with her family who were also at the table. The ceremony began with a few remarks from David Crombie a patron of the Hall of Fame followed by a few words from Lt. Gov. David Onely who arrived on his scooter. It began to feel like a really big event. For most of the weeks leading up to this, I couldn't wrap my head around my inclusion in this list, my nomination or my acceptance. I had somehow managed to turn this honour into something less. Like, if I was getting inducted, it could be all that important.

It must be the habit of those with limited sense of self, 'if I do it, it can't be exceptional' 'if I know it, it can't be important' 'if I've acheived it, it can't really matter'. That's what I'd done with this. People often congratulated me, here on the blog and in the real world, and I accepted the congratulations kind of believing that everyone had been hoodwinked into believing the impossible. Do they see UFO's too?

I was the third recipient. I was guided to the base of the ramp. I knew it would hold me because Joe and I got there early, before everyone, and I checked it out. I waited as my accomplishments were read out, my work regarding healthy sexuality and sexual rights for people with disabiliteis, my work aimed at reducing the abuse of those in care, my 'courage' and 'steadfast' committment to ideals. I couldn't even blush because it seemed, right then, that I was accepting the award on behalf of someone who was unable to attend. When indicated, I glided up the ramp and managed to take hold of the mike.

In my bag, untouched, was the speach that I wrote. I decided, only moments before not to read it out. I decided instead to simply talk. Talk of the trust we are given in care providing roles by family members. I spoke of a man's love for his daughter, his fear that she would be hurt, his impassioned plea to all who worked with her that she be safe. We are given trust. We are given an awesome responsibility to care well for those who are vulnerable to our moods, our words, our touch. I talked about the will to make changes so that all are safe. As I spoke I noticed one man, throughout my talk he slowly pushed his chair away from the able, as if wanting a better view. As I spoke about a father's trust for his daughter's safety he gently nodded. As I spoke about the systems failure to be trustworthy, tears began to fall on his face. I had to look away from him because then I knew, really deeply knew, that the work I do is important, the effort I put into my mission is valuable, and maybe, just maybe, I am too.

I rolled down off that stage not feeling like I had acheived something and now could rest. I came down thinking about what's next to be done. About how the very next day people were coming from Pennsylvania to meet with Manuela and myself about processes, practices and protocols for keeping people safe. About how the work is well under way but not done. About how my hands, which held this beautiful award, needed to place it down and let it gather dust, as I went back to work.

It Happens At One PM Today

Here is the portrait that will hang in the Canadian Disability Hall of Fame after today, and which will be on display 24 hours a day at Metro Hall as part of a permanent exhibit. I had to dig around to find a picture to send to the Hall of Fame people and have to say that the artist did a great job.



For those who cannot read the text on the bottom of the portrait, it reads:

For more than 30 years, David Hingsburger has fought to reduce the sexual victimization of people with developmental disabilities. A prolific author, lecturer and therapist, Hingsburger has campaigned fearlessly for greater awareness of the sexuality of people with disabilities while also coaching individuals with intellectual disabilities how to recognize and deal with problematic sexual behaviour. Hingsburger’s leadership and compassion have made it possible for more Canadians with disabilities to live with the dignity and respect that they deserve.

For those who would like to visit the hall of fame on line, please visit:

The Canadian Disability Hall of Fame

To read about each inductee, just click on their portrait.

I'll be back tomorrow to tell you about the day. I'm a wee to excited to write anything coherent right now.

60 Seconds

Tomorrow, Monday, I am going to be inducted into the Canadian Disability Hall of Fame. I've been given the schedule of events and it looks like it's going to be a very cool experience. I'm still a little in shock at being both nominated and accepted, I never expected to be in any kind of Hall of Fame for anything much. It's cool, too, because I'm being honoured for my work in the promoting the idea of healthy sexuality and sexual rights for people with disabilities as well as for my work in abuse prevention. As such, I'm being inducted in the Builder category. To be seen as a builder of the community to which I now claim membership is wonderfully affirming.

But here's the kicker. After being inducted I am given 1 minute to speak. That's 60 seconds. Man, that's a toughie. I've known this for several weeks of course and should have been thinking about it. But I approach problems by avoiding them for as long as I can. This works well at removing stress for a couple of weeks and then shooting it up for a couple of hours. Not healthy, not optimal, but it works for me.

So today I have but one job. I've got to write a one minute speech. I can fill a day, in fact several days, on a variety of topics, but filling one minute seems impossible. I wrote a couple of lines yesterday and read them to Joe. It took me about 5 seconds. OK, now I've got 55 more.

So if any of you have hints for what to say, I'm all ears. I'll probably still be working on this on Monday morning. AAAAAARRRRRRGGGGGG! Fear just clutched at my throat ... time to stop and get to

an extra post cause I loved this

Parking Lot with Two Bedrooms

Our apartment now looks like a wheelchair parking lot. I've got my office wheelchair, my power chair, my broken one is back and fixed, my new one is leaning up against the wall. Anyone who comes in will get the idea that herein lives a cripple very, very quickly. For me, it was the end of a difficult time. And, though I'm not focusing on it, I worry about the future.

It seems that people with disabilities don't like choices so we have others make them for us. The issue of the tires was a huge issue. Most of the new chairs, here in Canada at any rate, come with black tires only. The black rubber is supposed to be harder, more durable, last longer and roll easier. Well, I don't know about the rest of the claims but it's impossible for me to push. It just seems to stick to the floor. The gray rubber is much easier for me to push. So, that's what I ordered, that's what I wanted. When the chair came with black tires, I tried it again and sure enough it was hard to push. The delivery guy said, 'No, it's fine.' I said, 'No, it's hard to push.' He said, 'The rubber is harder, it's easier to push.' I said, 'No, it's not.' I couldn't believe that I was being contradicted about my own experience in the chair. Like if he said it often enough the chair would begin to push it's freaking self.

I was informed that the gray wheels are no longer made that all are made of the black rubber. I wasn't sure if I believed my supplier so I called AMG wheelchairs - the brand I like. I spoke to a sales guy there and was told that they no longer made the gray tires. I told him that I preferred the gray, he said, 'We only make the black.' Why they couldn't have a choice for customers, I don't know. I do know because I made some calls that a variety of institutional settings like hospitals are complaining about the black tires because they leave marks on the floor. So it isn't just me. But even if it was, shouldn't there be a choice. I'm afraid for my next wheelchair I'll have to travel to the States to get it. There seems to be more options there.

So, how did I get gray tires. I had a very old chair with gray tires, I had the company pick it up from my office to see if they would fit on the new chair. They did. So I have a new chair with old tires. No there was no reduction in price because the WHEELS on the WHEELchair are old and worn. But, I didn't expect that anyways. I had no choice. There's that pesky complaint again. I did what I had to do.

When talking with someone from the office today they made a joke about how lucky I was to have had the week at home. I didn't say anything because they weren't being mean but how do you explain that being at home instead of work is only better if it's a choice (hmmm, theme here). It isn't so much fun when it's imposed. So, I've got a new chair with old wheels, I've got an old chair with fixed wheels, I do not have a completely brand new chair - even so, I've got mobility and with mobility comes a renewed sense of freedom.

Next week is a huge week for me. It begins the run towards December with the induction ceremony on Monday, a visit from the folks from PA on Tuesday, lectures in Peterborough, Orillia and Vaughn and then on Saturday the flight to London for the beginning of our month long UK lecture tour. Having transport I can rely on is a massive relief. We both agreed that if this had to happen it happened at the perfect time.

What struck me, though, was how disabling disability is when things don't go right. How everything moves so slowly as if it didn't matter that you couldn't move at all. How hard it is for people to understand what it means to have circumstances, not health, not desire, not planning, determine what tomorrow brings. How hard it is to cope with life at the raw edge of disability.

I guess there is no perfect time.

I missed the me that I would have been last week. My sole compensation is that I'm looking forward to being the me I will be next week. If that makes any sense at all.

Joe's The (Older) Man

Happy Birthday!! Today is the beginning of a unique month long period. Today Joe becomes one year older than me. Until my birthday in December, when we become the same age again, I get to be the Boy Toy, the trophy bride. Joe bears up remarkably well with this, but then, he's older, wiser and very much more tired.

We have little planned the new wheelchair arrives between 9 and 10, I'm dreading what's coming through the door and simply hope it's usable. It ended up being such a frustrating experience, my need for grey, not black, tire rubber has ended up costing me so much money. But you've got to do what you've got to do. And what I do, in situation's like this, is pretend that everything is OK until everything is OK - then I can cry. May not seem like much of a strategy but it's incredibly successful.

Yesterday was cool because I was able to go out for tea and then grocery shopping with Joe and then send him home. Me and my power chair took off and wandered from store to store shopping for presents. I am a born shopper so I was in my element. I had to ask for help a few times but people were kindly and I managed to get what I wanted without too much frustration.

I liked being out alone, knowing that Joe was comfortably at home. I liked being able to do things for him, without needing something from him. The power chair has made it possible for me to really surprise him with the gifts I've picked up. It was nice buying something placing it into my shopping sack and smiling thinking of his reaction to the gift. This morning, later on, we'll do the gift thing. If it isn't raining, we'll go for a beer. If it's raining, I'm sure we can keep ourselves busy.

I've lived with Joe for 71.42 percent of my life - and he still has 100 percent of my heart.

Connected

Wheelchairs are sorted, Friday the new chair comes, enough of that topic.

Modern technology has eased my problem with mobility. Having a computer at home that allows me access to my office makes it such that I could be sitting at work. I miss the interaction with others, I miss the ebb and flow of people, I miss, really miss, the snack cart. But I've been able to focus on some things that need doing.

I remember working on the radio documentary Life, Death and Disability for CBC radio. Many people with disabilities I spoke to mentioned how the computers have radically changed the world for people with disabilities. How people with limited mobility can make contact with each other, establish community, earn a living, because the internet makes such miracles possible.

At the time I was years away from experiencing disability from a personal perspective. I found these comments interesting but didn't really 'get' it. I do now. I am less 'disabled' by lack of mobility than I would have been years ago. I am a better employee because of technology. I am able to fulfil my purpose and my boss's expectations at the same time. All because of a really advanced typewriter.

As time marches on, as technology and design catch up to human needs, disability becomes less and less relevant. I watched a man with a disability go, unaided, into a store, pull up to a clerk, catch her eye (which wasn't difficult), and then push a button on a machine. A voice spoke, 'Hello, I wonder if you could help me find the new DVD by Madonna?' The clerk, fascinated by the machine and the voice, started chatting with him as they walked through the aisle asking him questions about the machine, he'd have to stop and push buttons. It was obvious he'd pre-programmed some answers. It was amazing. Suddenly he was simply a customer. Like one of those cool videos where one thing morphs into another ... only he simply morphed from what she first saw to what he actually was. Very cool.

For those of you who fear one day living with a disability, let me tell you that it doesn't mean what it did only a few years ago. Lack of mobility, for me this week has been an inconvienience not a disability. How cool is that?

I'd like to, here, formally thank Vita for being and employer that honours the needs of employees with disabilities and encourage other companies to realize that contributions by people with disabilities are possible with just a little creativity and a touch of compassion.

The Leaning Tower of Me!!

I am at home.

I am supposed to be in New Orleans.

On leaving this morning to go down to catch the bus to the airport, I lifted my leg to put it on the footrest and then tragedy struck. My wheelchair began to lean to the left and then with barely a wimper, died. I was panic-struck. WheelTrans was coming to get me, I was going to meet Manuela at the airport to fly down to do a presentation at NADD, we had flights booked and pre-paid a hotel room (to get a lower rate). I saw a fun trip disappear. I saw money fly out of the window. I saw hours of trying to get myself mobile again.

Everyone was understanding. Manuela was very cool about it. Joe, whose birthday we were going to celebrate in the Big Easy, was great about it. But sometimes I feel the burden of others 'understanding' hard to bear. I simply wanted to get about getting there. But I knew it wasn't going to happen.

The wheelchair company promised me something by the afternoon but then a wrenching call told me that they were having trouble getting a chair with the kind of tires I like. I talked to someone I know here at the building and ended up with a mechanic type guy in the apartment saying, 'I think I can get this going again, can I take it with me?' He called much later, saying, 'This is a little more difficult than I thought.'

So, I got on the phone and started calling wheelchair stores. People were nice, I've even got a guy whose going to go through their warehouse to find something for me. I'm grateful but my anxiety is through the roof.

What next, I don't know. Life is sometimes incredibly difficult. I know that things will work out the way they will. But until then, I worry. Constantly.

Coat

She forgot her coat, momentarily, on her chair.

We were all having lunch in the lobby outside the lecture hall. She sometimes comes and works at our book table when I do lectures here in Southern Ontario. I don't know her well but I enjoy her company. She doesn't let her intellectual disability intrude on her personality, she knows that she's funny, and she knows that she's skilled. Awesome.

Me, though, I have to constantly fight the early training I had. The training that taught me to fix their errors, never let them think for themselves, tidy up after them. It's old school, it's inappropriate, it restricts growth and teaches dependance. I know all that. I do. Even so ... my oh my how the urge is present.

So, when she forgot her coat, momentarily, on her chair. I almost called out after her. Almost made a bit of a deal about it. Now the three of us were still sitting there. Joe and Nikki from Diverse City Press - the coat wasn't going anywhere, it wasn't in danger of being stolen, it was just simply left behind. If Nikki had left her coat, I wouldn't call after her. I'd take it to her if she didn't come back for it. I may not even notice it was left there because I'd assume it was supposed to be where she left it, that she didn't want it right now, that she'd come and get it when it when she wanted it.

Instead of saying, 'You left you coat,' I did something else.

I said NOTHING.

I let it go.

A few minutes later she came back, looked at us and said, 'I forgot my coat.' She laughed at herself and went on her way. There is a huge difference between correcting yourself and being corrected.

Whew, got that one right, but gosh it's hard to simply 'shut up'.

The Book Club Is Back!!

It's time for another book club here at Rolling Around In My Head. We've had two thus far, Thread of Grace and Zoo Station. Both wonderful books and both, by accident not design, set in the during the Second World War. The book chosen this time,The Lottery, is set in present times so will be a big change and a welcome relief to those who do not like historical fiction or tales of war.

Patrica Wood's book tells the tale of a man with a 76 point IQ, that extra point makes a huge difference to him because it means that he's not 'r@tarded'. This alone is worth discussing. The title gives away the only plot point I'm willing to mention here. The main character wins the state lottery. The book is not about the money but about what money does to those around him. Family, friends, acquaintences are very much affected by his winning.

His Grandmother taught him survival skills. She knew that the thorny issue of 'trust' was a difficult thing for him and therefore ensured that he had some rules to follow. Extremely thoughtful parenting there.

The book is not as predictable as its plot may suggest. I was taken aback by the twists and turns and found myself tensing up at a very realistic portrayal of preditors and prey.

An interesting read. It's newly released in paperback so it won't be too expensive.

Here's what happens. All you do is sign up here in the comments section. If we get 7 or more signed up, we'll go ahead and set a date for the book club. Right now I'm thinking the first week of January. That will give everyone a lot of time to get the book and get reading it. It also will time well with the book club at work. Vita has a book club and we'll be doing The Lottery in January as well.

Hop on board, the last two were wonderful, this book looks to be the same.

Our New Profile Photograph

Self Portrait of A Blogger With A Camera

A Little Good News

I have been accused, oddly for an optimist, that I focus too much on the negative in my blog. I'm constantly being told, always by non-disabled people interestingly enough, that there are more good people than there are bad people so I should write more about them. And, though I tire of people telling me what I ought to write, what I oughtn't write, what I should say, what I shouldn't say, words I can use and words I can't (when did writing a personal blog become a committee process?) ... they do have a point.

Yesterday began with breakfast with friends and then Joe and I headed downtown. There were a couple of things we wanted to pick up, a couple of things we wanted to check out, and we figured that around noon we'd go to the theatre and catch whatever is playing. For the whole day it seemed like assholes all took a day off, that maybe they were at a convention or something, and only nice people were out on the streets.

Some nice things that happened ...

1) At the movie theatre we arrived to find people sitting in the wheelchair seats. They saw us and immediately got up and apologized and found other seats. One could quibble that they shouldn't have sat in the wheelchair seats but shush, they moved without complaint.

2) I was driving directly into the path of a fellow talking intensely on the phone, he saw me and we both swerved, me to my left, him to his right, which kept us on a collision course, a couple of swerves later we managed to get it right. We both laughed, I said, 'Thanks for the dance.' He said, 'Next time remember, I like to lead.' Nice.

3) Every time, that's every time I had to try and get by a group standing and talking, someone in the group noticed and got people to move. Everyone did without complaint. It was all smiles day.

4) At breakfast there were two of us to be accommodated, one on a scooter, me in my chair. They moved the chairs and tables about, I stuck out a bit, a friend sat at the end of the table, sticking out a bit - and no one made an issue of it. We simply had breakfast, all comfortable in our seats.

5) We bought Ruby a new parka, all soft pink and Sadie a new sweat suit complete with hoodie and when we brought them up to the counter the clerk made a comment that the two little girls were lucky to be getting gifts from 'men with taste' which I think is a euphemism for 'men who are queer as a three dollar bill' but it was nice to be treated as a couple, despite gender and disability issues, and as having family.

So, all in all it was a good day dealing with nice people. So there. I do write about good things and good people. But I appreciate the prompt, it was surely a nice post to write.

An Hour Too Late

As with much of my life, I didn't understand what had happened until it was over. I should have too because I'd been set up to 'get it'. I was finishing my Christmas shopping for family on the West Coast yesterday, something I need to do because I'm in England and Scotland for the whole month of November. Driving down a steep ramp I heard a couple of women use the word 'retard'. I couldn't stop to hand out one of the words hit cards, but I also couldn't stop myself from speaking out. I called to them 'Retard is such a ugly word to say.' They glanced at me with hostility and I tried to smile gracefully back.

So, I had been reminded, prompted, that the world can be unkind and unsafe for people with developmental disabilities. Too, Manuela (my boss at Vita) and I had spent nearly 3 hours with people from another agency wanting to learn what steps we had taken, as an agency, to confront abuse and to make the valient attempt at becoming abuse free. We spoke of how people with disabilities are tricked, manipulated and abused. That people will use thier disabilities against them, about how ugly that concept is. So I should have noticed.

Heres what happened:

I stopped at a shop that had something I wanted to get for my mother. They had a variety of them but the only one I liked was the one on display. I liked the vibrancy of the red and the deepness of the black, I thought it was perfect. The fellow came out of the store and I told him that I wanted the one on display. He picked one from the rack and said 'This one is the same.' I looked at it, it had a different red, a different black and a different pattern. I said, 'No, that's not the same.' His voice became firm, 'It is exactly the same.' I said, just noticing, 'It has leopards on it, this one does not.'

He then reluctantly took down the one that I wanted. On our way out of the store he said, 'Your mind is sharp, then. It's just your body ...' I looked at him, at that point, with anger. What a thing to say. I thought, at that moment, that my blog point was going to be about his inappropriate and insensitive comment. But when I got home I realized that what he had done.

First, he had assumed that I had an intellectual as well as a physical disability. Second, he thought, because of that disability, he could trick me into buying something I didn't want. Thirdly, he tried to bully me into taking something I didn't want, expecting that I would not have the mental resolve to stand up to him. Fourthly, he was entirely comfortable with tricking, swindling, someone with an intellectual disability.

How different is 'I want this one.' 'No, you want that one.' from 'I don't want sex.' 'You do want sex.' from 'I don't want peas. 'You do want peas.' from 'Don't hit me' 'I didn't hit you.' from 'I want to buy a candy bar.' 'You want to buy me a candy bar.' .... It's all the same.

Assertion.
Self advocacy.
Speaking up.
Self esteem.

The job is big. Bigger than we may expect. If we are going to continue with the goal of community living, we'd better figure out the skills necessary for community living ... First thing I'm back at work I'm going to review our curriculums for teaching. I want to make sure that we teach people that there are people out there who run shops that see you as a victim, not as a customer.

Not Quite Yet

Well it rolled in and then, a few minutes later, it rolled out again. I don't know a lot of terminology about wheelchairs so it's difficult to explain but, let me try. It seems that there are two kinds of wheel rubber: grey rubber and black rubber. The black rubber is apparently harder, is formed so less surface touches the ground and is supposed to roll faster. This may be true for others but for me it simply isn't. For me the black rubber sticks to the floor and is way harder to push and almost impossible to turn.

As soon as I saw the chair I knew I was going to have to send it back. Even so I got in and tried it and, man, it was hard to push. The guy explained to me several times that the black rubber was an easier push but when I said that I simply couldn't take a wheelchair that required increased strength to push and had barely no 'roll' he relented and took it away.

I panicked a bit but the company called and gave me some options and are working to get me a chair that will work for me. Because this isn't a crisis, because I ensured that there was time for things to go wrong, I think it'll all be ok. It's good to plan for problems even when none are seen on the horizons.

So no new chair - yet.

Having a disability has really helped me organize my mind differently. I know that systems have flaws - prepare for things, people, timing to be just a bit off. I know that everything takes way more time than anyone says - start early, stay calm. I know that relying on others isn't always easy - try to control what you can and only give over what you absolutely have too.

And it's working for now. Let's just wait and see if there is a new chair under my butt when I land in London. Anyone want to bet?

Delivery

Today, maybe, I get my new wheelchair. There has been a confusion, on our part, about delivery but we hope to fix that up right away. I'm excited as I was at Christmastime as a youth. I know it's just a basic wheelchair. I know it holds no glamour. But it means so much. Around this time last year, my old wheelchair wore out and died. The panic I felt was incredible. It was like I'd been shot in the spine. I'd lost all real movement.

As I've written before my wheelchair is USED. It travels the world with me, it gets handled by people who don't understand it's value. It gets dropped from airplane bellies. It gets tossed from worker to worker as it's taken up the ramp to meet me. Things get jostled, banged out of place, bent in shapes unintended. So, the chair works as hard as I do.

This year we decided with a long trip ahead of us, to preempt tragedy and simply replace chairs while this one is still working. So, today, we get a new chair. Awesome. Awesome. Awesome.

But here's the cool thing. Someone else gets kind of what I'm feeling. I called to see if the chair was in and I spoke to this really nice guy. He took down the details of my name and number and said that he was sure it was in but would get back to me. So, I waited. When the call came he said, 'Just want to let you know that I checked to see if your chair was in, it's here and waiting for you,' then he chuckled, 'I swear it's looking forward to getting out of here, looks like you have an eager companion.'

I knew he was joking. But at the same time I knew that he understood that odd and beautiful relationship between man and mobility. And I knew that he respected it.

I get my chair today.

As Long As You Understand

We pulled up to a very nice house. The WheelTrans driver got out to open the side door and I watched as a brilliantly dressed elderly man and his daughter made their way out of the house down a ramp that was installed with taste. As they approached the bus and greeted the driver the young woman, in her mid-twenties, excitedly talked about her upcoming day. Her movements with the walker were stiff and jerky but she still made her way along with confidence.

Father got on the bus and assisted her with her seat belt and then wished her a good day. There was love in his voice as he spoke to her. She again started talking with excitement about the day and the special activities planned at her day programme. He smiled a genuine smile and told her that she was lucky to have a day that she could look forward to.

As he got off the bus the called the driver over to him. He looked at her dead in the eyes and said, 'I'm trusting you, you know that don't you?' The driver, taken aback, nodded her head. 'As long as you understand that you are carrying my daughter and that I am trusting you with her ...' Again, the driver nodded.

We drove in silence for the rest of the trip. The young woman was dropped off at her programme and then I made it to work. As the driver was unclipping my wheelchair she said that she was new to the job, that she'd only been driving for three weeks. I asked her how she liked the job and she said, 'It's a big job, there are a lot of responsiblities, but I like it.'

Just as she was leaving me at the door she turned and said, 'Did you hear what that man said to me?' I told her that I did. She said, 'that's how they should start our training as drivers, he gave me chills, I'm always going to remember what he said.'

'So am I,' I thought.

Mercy

As we were driving through the night to get home on Saturday we drove by a neon sign put up to inform those passing by that we are recipients of heavenly love from a heavenly father. The trouble is the neon lit up only the 'v' in the word love so the sign read 'God v You'. Now, in legal parlance that 'v' stands for 'versus'.

And who hasn't felt like that. Who hasn't felt that the universe was conspiring to ruin every hope and dream you ever had? Who hasn't worried, when things were going well, when the shoe was going to drop? Who hasn't, in prayers, tried to bargain with a God who seemed to hold all the cards? So I get it. God v You indeed.

I chuckled when I saw the sign, even though something about it was a bit eerie. Then today we went over to the museum to see 'The 10 Commandments' which are here in Toronto for, as all the advertizements stated, 80 hours. We waited in the line up with my heart beating with real excitement. I knew it was just going to be a few bits of paper. I knew that. But it didn't matter. There was something powerful in just being there. Just being in the presence of those words.

I had joked that after years of being told that God would smite me because of my 'unnatural passion' that I'd be lucky if lightening didn't strike me as I entered the building. And, oddly, lightening did. I was in front of the tiny bits of paper and felt this tremendous desire to GET UP OUT OF MY WHEELCHAIR AND WALK ... sorry, don't know where that came from ... I felt this tremendous, and quite deep, desire to pray. The line up was long behind me, my chair took up a lot of space, even so, I laid my hand on the display case and said a brief prayer.

I prayed that in the case of 'God v Me' ... there would be clemency.

Three, III, 2+1

"Oh, no," I thought when I realized. Though it may sound odd to all but the most dedicated of bloggers, I was really disappointed. I had marked it in my mental calender, always a dangerous thing to do when one has anything approaching a busy life. The day came and went without notice. It was two days later when I realized that I had missed the third anniversary of my blog's first posting.

Clearly marking the date two days late is kind of pathetic. It's kind of like your spouse showing up with balloons and a birthday cake on the wrong day. It's kind of like getting one of those Gawd-Awful, belated birthday cards, you know the 'when you don't care enough' cards. It's kind of like having carollers show up on Boxing Day. Yeah, right, so it was two days later, what do I do, what do I do?

I mean I wanted to mark the occasion, October 6th, 2006 I wrote my first blog post. I had set myself the goal of writing a daily blog for a one year span. Then I planned on simply erasing it from the blogosphere and moving on. That clearly wasn't what happened. I found that I enjoyed the process of documenting my life, writing down things that I noticed, it was like having my own little Dear Diary but one left open for anyone to read.



Joe and I have not in any way documented our lives. We are not picture takers. We have very few photos of ourselves. There are others in our lives with way more pictures of us than we have. Somewhere around here is a wee photo album that has pictures of us as boys when we had a 'committment' ceremony many, many, decades ago. But other than that, we have nothing to show that we were here, we did things, we loved each other. The blog has become kind of like our collection of snapshots. Herein is recorded things that we did, places we went, conversations that we had. Suddenly I was writing a blog as much for myself, as much for Joe as for any of the readers. I think that's a good thing in a way. It means that I focus on what is important to us and what I want us to remember.

That's why, when the first anniversary came, I decided not to chuck it in but to continue. Too, I had found through travelling and through comments that there were dedicated people who had joined the little community here at 'Rolling Around in My Head' (nee 'Chewing the Fat') and it was a nice way of experiencing that odd thing called a virtual community. Here in the world of the internet I have a home and a voice. Here, I have a place to be amongst friends.

So, it's Thanksgiving Day here in Canada. Joe and I will be cooking up a storm in just a few hours. The house will smell of spices. Our plates will brim with good things, earthy things. We will clink our glasses and talk of all that we have to be grateful for. Thankfully, our lives are full of people and purpose. As we make a list of what matters to us, this blog and the community of people around it, will be highlighted.

The anniversary was missed. But the opportuntity to be thankful wasn't. That's all that really matters, isn't it.

What Ever You Say Bubba

Sometimes things happen that are so bizzare that you can't believe they are happening, even right when they are happening. Joe and I look at each other at such times to verify that 1) we are awake 2) we are not delusional 3) the cosmos is not playing a practical joke. For those fellow travelers who are about to enter the 'hub from hell' known as Chicago O'Hare ... be thee warned.

We arrive from San Francisco and have ordered a pusher to get us to the gate for the flight to Buffalo. We had flown in and out of Buffalo because it was hundreds of dollars cheaper than the direct flight from Toronto and we do what we can to keep costs down for organizers who bring me in to speak. I was very careful in ordering a 'pusher' not a 'wheelchair' because on our way through to San Francisco we got a pusher who was pissed off that I was in my own wheelchair because he had brought a wheelchair and 'people with their own wheelchairs shouldn't need help' he told me. He so didn't want to help us that his anger was almost fearsome. That we had to take help from him was diminishing. All the way he explained that I had to make sure that I got a 'pusher' not a 'wheelchair', I explained once that I make that clear when I make a reservation, when I check in and when I get on the plane, what happens with that information is out of my control. Then I just sat there and waited to arrive.

So when checking in we begged the woman at the gate in San Francisco to get the correct information into the system so that we didn't have to relive the ordeal at the airport. When we arrive in Chicago we have neither pusher or a twitching, angry staff with a wheelchair. We have no one. A customer service guy comes over and chats with us, says he will call. I tell him to ask for a PUSHER and explain why. He says he'll make it clear. He comes back to tell me that they had me scheduled for a cart but the cart was full so it didn't come. Um, OK, that makes no sense at all.

The pusher arrives with a wheelchair. Now the pusher is saying that he won't push me unless I get in his wheelchair. He keeps pointing to the weight capacity of the wheelchair which is boldly printed on the side showing me that it will carry me. I could see by the shape of the wheelchair that I would have difficulty getting in and it would be impossible for me to get out. I tell him that I am already in a chair and want to travel in my chair. He refuses. Disabled people have to go in approved chairs. I tell him my chair is approved and it's my chair. He refuses and says " let me explain the benefits of this chair" and then does. I say, "it's a chair that only able bodied people could easily get on and off of, I am not able bodied, and ..." I point out, "I am in a wheelchair already."

He looks at me with exasperation and says that he will not push me in my chair that if I want assistance I must get out of my chair and transer into his. At this point the customer service guy comes over and tries to intervene on my behalf. I suggest we put my luggage on that chair, pusher guy can push my luggage and Joe can push me. The only reason we need help is because we've got the carry on and Joe can't push me and take the luggage at the same time. The pusher guy doesn't want to put my luggage on his chair. Customer service intervenes and my luggage is loaded onto the chair.

At the elevator as we wait, he explains to me the benefits on his chair. Joe says, thankfully because I'm tired of the whole thing, 'Sir, I would have trouble getting in and out of that chair.' Then he explains how people get in the chair, now I know I simply couldn't do it, but say nothing because really, what is there to say?

We arrive at the gate and now how a couple of hours to wait and several other interactions of such common nastiness that it feels petty to even document.

Travel is for the hearty, I'll tell you, because without a sense of self and a sense of humour one's sense of outrage could cause calamity. And I'll say this for that guy and for 3 other people who I dealt with on the trip home. You should go home and thank God that I have a tremendous fear of jail time, or right now, you'd be dead and Bubba in the next cell would have claimed me as his bitch.

5 cents

If it's Friday it must be Sacramento. It was an odd morning for me because I was to do two workshops on sexuality and relationships and then do a brand spanking new, never given before keynote address. So while I was presenting on the one I was worried about the other. Not a great state of mind to be in while teaching. Even so, I gave it what I had. The fact that I had an audience that seem to be enjoying the ride made it so much easier.

I spoke about relationships and the need that people with disabilities have of being loved and wanted. Of relationships that were sexual, yeah, but were much more than that. That state of comfortable companionship that is offered in loving relationships needs to be thought about, talked about, taught about. In a world of so many artifical connections, real ones can sometimes be taken for granted.

At the end of the workshop a woman with a disability came up to talk to me. She told me that I did a good job. "I liked what you said about love," she said as she dug through her purse looking for something. Distracted by her search she kept talking about not wanting to be lonely for her whole life. Then she smiled and pulled a nickel out of her purse and handed it to me.

I told her that my lecture was free with admission.

"But you worked hard."

I did work hard, true, so I said, "I'm getting paid for being here.'

She said, firmly, "Well, you are going to get a little more." She put the five cent piece on my desk and walked away smiling.

I have it sitting right here beside my computer.

Someone else paid me for my lecture today but I'll tell you - that 5 cents made it worth the while.

Late Post

I had the horrifying experience of checking into a room only to find that I could not log onto the internet. This meant no email, no blog, no general messing around. I stifled panic. Sometimes I have blogs stacked up, most times I do not. I called and they did have wireless in the lobby. Oh good. The hotel is roughly the size of Dallas and we're in a room at the furthest point from the lobby - which is where you put the accessible rooms I guess.

So, I had a choice. I could rant and rage to no end. This is my default position and usually, I go there. But I could also spend more time reading, more time just relaxing, more time getting ready for the morning. None of those sound particularly attractive do they?

I found myself organized for the next day in near record time! I called a bunch of people but no one was answering their phone. So, the evening slowly made it's way passed. Up early, I decided to go to the lobby and write a quick explaination for being late blog.

So here I am tucked in beside the registration desk happily writing my blog. And I need to say ...

Even though I was only off line for about 12 hours.

I missed you.

This Chair

It creaks and it moans. Occasionally my heart leaps to my throat in fear. It's gotta just make it a few more days. Just before leaving on this trip I placed an order for a new manuel chair. This one is only a year old but with all the travel, being stuffed in trucks, traveling on planes, manoeuvring over cobblestones, it's already tired.

I'm facing a couple more North American flights and then there's a month overseas. I need to be able to rely on my chair. I was really excited when I placed the order for the chair and I'm pleased to switch to something new that I can rely on. Even so, as we count down the days left on our trip here to California, I am beginning to feel a wee bit of a loss. When I'm in this chair, it's part of me. This chair isn't just a thing, it's got its own personality. It has likes and dislikes. It has a familiarity that is comforting.

And then there are the memories:

Just two days ago I got a standing ovation in Red Bluff while sitting in this chair.

I first held baby Sadie sitting in this chair.

I sat in this chair on the boardwalk on a hot sunny day.

I raced down a huge ramp in Toronto in this chair.

Well, you get the point. There are memories tied up here. And I've got to move along. I've decided to use this chair as my office chair at Vita. It's got lots of 'sit' left and it's wildly comfortable. So, it's just a bit of a slow down.

Maybe I'll send it a post card from London!

(I'm wondering if others develop a bit of an attachment to their mobility devices.)

Your Daughter

I saw your daughter today, she was beautiful.

Have you seen her smile? I suppose not. At least not for years. Well, she has the most amazing smile. It's a gentle smile, a kindly smile her lips curve and then quiver. I've read that there is a genetic link in smiles. That families can be identified by their smiles. So if her smile is kind, yours must be too. And I wonder. Why couldn't yours have fallen on her a little more often.

I saw your daughter today, she was laughing.

Have you heard your daughter laugh? I suppose not. At least not for years. She laughs so quickly, so easily, with such a full heart. Her mind is quick and her laughter quicker. She sees humour in the world, she can bring light to a situation. She can laugh at herself, she can laugh at the absurd. And she has the dexterity of survivors. She can talk about family abandonment with one breath and be laughing in the next.

I saw your daughter today, she was thinking.

Have you seen your daughter puzzle through a difficult situation? I suppose not. At least not for years, perhaps never. Perhaps you never looked because you thought her disability made it unlikely that she would understand, that she would feel and that she would learn. But she understood what it meant when you said you didn't want her, that you didn't expect a kid with a disability, that she was a disappointment, an aberation, she understood that abandonment happens in stages and she knew one day you'd be gone. All of you gone. She feels, yes she does, and she felt that rejection painfully. She feels the closed door. She feels the silence. She feels the rejections. But she has learned to go on. She knows how to live without the love or approval of parents. She knows how to get on alone. She learns because she has to, she learns because she must, she learns because it's the secret to her survival.

I saw your daughter today, she was victorious.

Have you seen your daughter with her arms raised in victory? I suppose not. But you know what? She attributes her drive to you. She said that she was determined to do all the things that you said she couldn't and wouldn't do. She said that she was determined to rebel in the most powerful way she could rebel - by proving you wrong. You said she'd never go to school. She fought her way through college. You said she'd never live on her own. She fought her way to an apartment in town. You said she'd amount to nothing. She fought her way to a job of consequence. Her victories do not come at your expense, you never paid for them, but don't kid yourself. They cost. They truly cost.

I saw your daughter today, she was waiting.

I think for you. That smile she sees in the mirror, I think she'd like to see it on your face.

All Day Every Day

In Red Bluff, yesterday, I mounted the stage. We were in a community center sort of place and though they had one of those specialty lifts for wheelchairs, it was full of stuff having become a bit of a store room, I decided to face the stairs. The hand rails were strong, the stairs were neither wide nor deep, so up I went. I made it to the top in short order feeling a bit like I'd conquered, in not a mountain, at least a self imposed limitation.

The view of an audience from the stage is very different than it is from the floor. There is this huge barrier created by space and height. While I like it that all can see, it takes a wee bit more work to create a sense of intimacy, a sense of 'it's just Dave' so that the audience will talk to me, ask me questions, make commentary on the presentation.

Even so, the crowd at Red Bluff managed to pepper the day with questions, observations, concerns and stories. Near the end of the day, a woman with a disability asked, 'Don't you ever want to have just some part of the day where you are not labled, where you are just human?"

I began to shake my head slowly as soon as I got the gist of her question. I have come to realize that I have a disability 24/7. I don't get breaks from it, nor it from me. I don't take holidays from being disabled. I don't get coffee breaks from the way I move and exist in the world. And maybe at first I wished that I could have 'eased in' to the experience ... but that's not how disability works. I wanted her to understand that I am disabled 24/7 but that I am also human for that same time period. I do not have to wish to be simply human because I already am. I do nothave to insist on personhood because it comes with the territory. It's only others who want to take that away from me - I cannot blame disability for things it doesn't do ...

All disability does is make my way of moving different.

It doesn't erase my humanity - others do that when they treat me in prejudicial ways.

It doesn't take away my personhood - others do that when the look at me and see 'chair'.

It doesn't take away my individuality - others do that when they institutionalize me in their minds.

It doesn't take away my freedom - curbs do that, building steps do that.

I cannot blame my disability for the actions of others.

There are some who treat me vastly differently, true. But I never stopped being me, they stopped being them. I refuse to take responsibility for anothers decision.

When the day was over I was sitting outside in a warm California afternoon. Predictably it was sunny. (Why do they need a weather channel) She, the woman who asked the question was standing beside me chatting for just a wee while. Then we were joined by a fellow in a wheelchair and we all talked for a short while. Other's stepped around us as they left the building. I wanted to ask her if my answer made sense but I didn't want to put her on the spot.

Just before leaving she smile, hugely, and said thanks for the lecture. I thanked her for coming and the day ended.

She went off into a world, I hope, understanding that for 24/7 it was ok to be completely and uniquely her.

With Apologies to Those Who Actually Know What Feng Shui Is ...

So, it ate away at me. Even though we were driving through the California countryside on a beautiful day, my mind wandered from the view outside to the feelings inside. Part of me was worried that I would be changed from my experience of hurt. Part of me was worried that I wouldn't be. Odd as that may sound.

Joe said, knowing what was going on, 'Why don't you do something about it.'

Frustrated, I said, 'Like what?' And I meant it. I think that was part of what was really bothering me, I didn't know how to make it all better. I didn't know what to say, what to do, or how to affect any change at all. The incident was over. The 'perp' was far away in another city. The world went on as the way it was, the world would continue on as the world always does. There was nothing, absolutely nothing that I could do.

"Feng Shui," Joe said.

"What?" I said.

"I don't really know what Feng Shui is, but I think it's about changing the energy. Like moving a bit a furnature can make the energy flow better.'

Joe often says things that are a bit incomprehensible but this was going a bit far. 'You want me to move some furnature?'

'Yeah,' he said, 'do something really really nice for someone who doesn't expect it, maybe doesn't even deserve it. There's bad in the world, so counteract it by doing something unexpectedly good.'

It seemed like a lame-assed suggestion but I thought for about fifteen minutes and then spent a half an hour arranging something really nice to happen for someone who certainly wouldn't expect it. Someone that has need of something good to happen. Someone who would be totally, totally surprised. Once arranged, I made a call and shifted a celestial couch.

And, it kind of worked. I spent the rest of the day remembering a surprised voice. A happy voice. That voice replaced the one the kept bothering me in the morning, the one that insisted, 'give up, it isn't worth the fight, give up.'

a tale untold

Normally I write my blog before going to bed and then set Blogger up to automatically publish it. Last night, though, I couldn't do this. I sat in front of the screen for nearly an hour trying to figure out how to write what I wanted to write. I finally shut it down and gave up. Joe asked, 'Aren't you going to read me your blog?' It is our habit that I read him my blog just before going to bed. I told him that I didn't know how to write it. He said, 'I know, who would believe it?'

You see yesterday we, the two of us, were victims of such a wanton act of cruelty and meanness that it left us reeling. Stunned. Afterwards we sat together for nearly an hour without speaking. Each of us trying to understand, each in our own way, a specific, targetted, purposeful act of mean-spirited cruelty. Each of us was left wanting.

Throughout the whole of the rest of the day we revisited the event, tried to find an explanation for it. Each saying, 'I didn't do anything' as if 'doing something' would have explained it ... would have made us deserve it. Why is it that victims look at themselves to explain another's cruelty. Perhaps it's only right because I'm sure our tormentor blames us too ... simply for being. Maybe that's reason enough to hurt someone else.

I can't even tell you about it. I can't even begin to write down the events which have caused me such personal distress and pain. Partly because I simply don't trust my talent with words. Partly because I don't trust my objectivity in explaining it. Partly because, maybe and I'm sorry, I don't trust that you will entirely understand - and I need understanding more than anything.

So it will be, for now, a tale left untold.

But I now know, truly, that meanness has no cause but will. People will to be mean, people are cruel because they can be. I have never ascribed to the 'he was hurt by his mom' ... 'she was having a bad day' ... explanations of cruelty anyways. Now, I know that people who can, will, people who want to will take any opportuntity.

I am not always the innocent victim in my stories.

I am now.

Mean people suck.

Words Are Chosen

In Defense of Myself and of My Words:

I received several emails complaining about my choice of words when I wrote of the horrific treatment of Francecca and Fiona Pilkington by their neighbours. I used the words 'shit' and 'pissed'. Apparently this is simply inappropriate.

I tire of these kinds of emails quite frankly. You need to know that when you read my blog or hear me lecture I am choosing my words carefully. I do not use coarse language without forethought. It may seem casual but it isn't. Words have an effect, I'm aware of that.

Let me explain my thoughts about writing what I wrote, those youths, those toughs, those hoodlums who shoved 'shit' through the door were shoving 'shit' through the door. That wasn't feces, it wasn't human waste - it was a frigging message. 'Shit' is what they shoved. 'Shit' is what I called it. To use another word reduces the sheer horror of what they did to that family. It sanitizes the actions of the mob. It does a disservice to mother and daughter. God knows they got enough of that.

The same goes for 'pissing on the yard' ... that's what they intended, that's what they did and that's what I called it. I don't subscribe at all to the sanitizing of hatred. Unless we face the fact that gangs of toughs shoved 'shit' through a mail slot ...

shit

SHIT

S...H...I...T

and pisssssssssssssed all over the lawn - we cannot understand why a woman would kill herself and her daughter rather than face another day.

So please, please, instead of expressing distaste at my language, why not express outrage at the acts of horror? That's what we need to do ... let's not pick at each other ... let's gang up on them.

OK?

OK?

The Visitation

Seven days old.

Sadie and her family came to visit today. We shut down the computer and spent some quality time. We'd missed Ruby's 3rd birthday because we were on the road, the dress you see in the picture was one that we picked up in Ireland for her and she, little clotheshorse, loved wearing it. Though I love the posed picture that we have here of us with the wee one and the incredibly wee one, there is a picture we didn't take and that's the one I want to tell you about.

Ruby has known me since birth and that whole time I have been, simply me. That means of course many things. Ultimately it means that I'm a fair bit different from most people. As Ruby has aged she has begun to notice, and comment on various aspects of who I am and how I exist in the world. Last time she asked me about my wheelchair. Her questions are curious, not hostile, and I welcome them. 'Dave why don't you walk?' 'Because I can't walk.' 'Oh ... that's why the chair has wheels.' 'Yes.' 'OK.'

Simple questions and simple answers. I'm cool with all that. What I've worried about, because I am held hostage to insecurity, is that one day she will have to choose between valuing me and devaluing difference. Peer pressure, societal expectations, the need to conform being very, very strong, I wonder if one day I will lose. And it will, should it happen, hurt.

So today, she said to me, quietly as I was sitting here at my desk. 'You're different.' Those are only two words and they lead only to one of two directions. I said, 'Yes, I am.' That was it. Nothing more than statement and confirmation. I felt tears at the corner of my eyes. I always emotionally prepare for the worst. But then, suddenly, activity.

We were up and out for lunch. We discovered wonders at the dollar store. We went to the mall for a walk and a bit of shopping. As we headed over toward the elevator to go downstairs Ruby came up beside me and took my hand. I drove along side of her and she held on tight. New places don't scare her but she likes to know that she's safe. My hand, apparently, was the one that made everything OK.

I heard Mike say to Marissa, 'That would make a wonderful photo.' But I asked him not to take it. I decided that the photo would change the moment. From something natural to something posed. From something different, to something ordinary.

I guess I need to start believing that love is a little tougher, a little stronger and a little more durable than I have come to believe.

Today I Mourn

They pushed shit through her mail slot.

The police, alerted, did nothing.

They pissed all over her yard.

The police, alerted, did nothing.

They smashed windows, covered her house with eggs.

The police, alerted, did nothing.

Her daughter, with an intellectual disabiillty, was tormented constantly.

The police, alerted, did nothing.

Her daughter, forced by more than a dozen boys to pull her dress up, humiliate herself.

The police, alerted, did nothing.

She called.

And called.

And called again.

For over ten years.

She called into silence.

She wanted protection.

She wanted the pain to stop.

She wanted her daughter to be safe.

But the police did not come.

Everyone knew of their victimization.

Everyone of consequence.

Everyone with power to act.

Except none did.

Encouraged by lack of action.

The tormenting continued, escalated.

Then after another call, unaswered.

She drove until she found somewhere perfect.

She poured gasoline in the back seat.

She and her daughter sat in the front.

And waited to be burned alive.

It seems hell's flames.

Were preferrable to human cruelty.

Yes.

She killed her daughter.

She killed herself.

But.

Who is guilty?

Francecca and Fiona Pilkington no longer live on this earth.

Hate hate.

Hate silence.

Criminalize disphobia.