January 23, 2011

A picture of the crane and the cubes that I have been describing to you appeared in The Toronto Star today. Here it is:



They are indeed modular parts of a building. A prision. The night-time, secretive play of giants turns out to be the reconstruction of the infamous Don Jail in downtown Toronto. The cubes are manufactured in Texas, trained to Toronto, and trucked downtown. The cubes are sturdy enough to be stacked several stories high, yet each is self sufficient, down to the plumbing. The ultimate assembly will hold over 1600 prisoners.

When I was about eight my younger brother and I reveled in stuffing our kitten into a cardboard box and trapping it there for hours. It died of the stress.

Ivan Illich said the only authentic response to pure evil is silence, because any other response sets up a dynamic that lends the evil a defined presence in our culture. I am not sure I believe that, because, as Marsha used to quote: "They came for the Jews, and I wasn't a Jew, so I kept silent, ... , and when they came for me there was no one left to save me."

I am stunned that this intriquing, enormous, slow dance of the gigantic cubes that has been unfolding under my bedroom window since mid-October - this large nightly activity is the deliberately plotted internation activity with an intended outcome of increasing our local prison population and to do so in as cheaply managed, most inhumane way as possible. Rob Ford, our vigorously right-wing Mayor must be gleeful indeed!

Suddenly, the view from my bedroom window has a sinister cast. My dreams will not be so peaceful.

January 18, 2011

Today:
- The GTA, and apparently lots of the eastern seaboard, stopped in anticipation of an ice storm, or because it really hit. Here in the city of Toronto proper it was all hype. Mike and I walked to and from Laser Eagles.
- Mike and a little bit I started to draft the WPIT organization chart, with the Smart Draw software Peter Christianson bought for us.
- We made real progress with the painting “Dirty Window”, and painted another left over paint piece.
- Elizabeth and I made a little progress with grant writing.
- I landed a small monthly job.

The stuff I DIDN’T get done fills another half page. My desk is a mess. Stuff “to do” is spilling onto the printer, the dining table, the bureau, sometimes my bed.

I haven’t yet started reading the draft of my book!

When life gets like this I get jittery. Yes, I have moments when I experience the “going forward” but I also feel the anxiety of fearing that the “not done” will sneak up and bite me in the ass. Why have I not yet written contracts with Mike, Kimberly, Dan, Elizabeth and Peter? What about scheduling, performance reviews, hiring, training, What about fund raising for the assistant’s salaries? Etc., etc.

Tomorrow I must get “real” and figure out who is going to take some of this on. Gloria keeps on saying I don’t give things away. I don’t think this is what she means, exactly, but somehow I literally can’t keep up with myself, or so it seems today.

At the same time I believe that the jitters really come from the small me fighting the international me, somehow worried that I am not “safe” playing out my life and vision in this way. Be small “it” says. Take on less. Don’t expose yourself.

Well it’s too late for that now, isn’t it!

I have heard it said that a powerful road to success is to plan to fail often and progressively – learning something with each failure. If this works, what failure could I take on next which would make a real difference?

Some candidates are:
- finding two executive assistants
- selling my art for big bucks
- preselling my book
- How about – getting the Nobel Peace Prize? I like that one!

Tomorrow I will start to find out what it takes to win the Nobel Peace Prize! Even if I never get it, putting the steps into place must make a genuine difference in how the world views and does Inclusion.

January 17, 2011

At about 4:50pm EST I was sitting with Helen and Dad in a branch of the TD bank watching the black computer screen of the burly, sometimes surly, financial officer as she set up a joint line of credit on the GIC that Dad has willed to me on his passing. The intention was to pay off the loan on the trailer that Gabor, Jason and I lived in on the WPI Tour up until Sept. 22, 2009.

Suddenly a clear white sentence appeared in bold letters near the bottom of her screen. TRANSFER APPROVED LOAN PAID OFF.

I nearly cried, fainted and stopped breathing for two seconds. The enormous unshiftable burden – the physical sign of my failure to manage my life during those seven months, the unending anxiety of a responsibility I can’t meet yet must meet every month – in a split second dispassionately disappeared.

I had no idea of the extent of the weight on my spirit until it was gone. And when it was gone, it was just gone. A pile of papers to sign, two managers to say “Yes”, an electronic ritual to complete precisely – and the white letters simply appeared at the bottom of the computer screen.

Forgiveness has been dispensed.

This does not mean I have no financial concerns. It means I have a path to getting from “red” to “black” to being once again free to powerfully impact my and other’s circumstances with my own money, not just other’s on my behalf.

I owe so much to my parents I cannot fathom the depth. My Mother’s relentless saving reaches from beyond her grave through my Father through his love of me and of manipulating his GIC’s to release me from the shackles and the shame I incurred for throwing my hat over the wall in 2008. I am blessed.

My sense of mission is once again reinforced. Why am I so blessed, so lucky if not for being yet again showered with opportunities to keep on bringing Inclusion. Forward – go forward!

Today I met a young research student, and in a nutshell, a feasible research project is emerging around measuring the impact of the WPIT inclusive video games on the peacefulness of the children and youth who play it. A new “Yes”, a different “Yes”, a powerful “Yes”! Forward – go forward!

Jen was here this morning. Together we explored the nature of standing. For me it was more like having a conversation with my body about the experience of standing – the being of upstanding – of leadership and courage. I am stretching and parts of my body are turning and curving differently. The body of Judith is discovering how to support her stand.

I, Judith, am leading the world, through a planet wide team of young people, into an international culture of abundance, inclusion and peace. It is my destiny and I choose to fulfill this dream.

January 8, 2011

There was no crane action today.

Today was very much a day of sitting still and being bathed in the profound. This is particularly hard on my back – the sitting still part I mean – and I actually lay on my bed for part of the late afternoon.

In the morning ‘til late afternoon I was being taped for the Book of Judith. Sarah and Michael want a different sort of ending for the play for those performances where I cannot show up. For the life of me I don’t understand why someone else can’t just play me. Instead they want to have a video of me make the icon of me appear to come alive, rescue Mathew from the part where he is left naked not knowing what to do next, and end the play.

So there I was wrapped in the same winter weight poncho which I am wearing in the iconographic picture already used in the play. I was interviewed in this coat under intense video lights with the apartment windows shut to cut down the background noise. I was to stay still for the most part so the video, when edited, would fit into the icon background, and thus I will seem appear in the wall to the audience

What did I say? I don’t remember much of it, but most of it was serious in tone and some was profound, or close to it.

I remember sharing what I have recently learnt about my failure to notice people’s boundaries and how the gift of intimacy without proper limitations can bring people into difficult situations. I am certain that if Caleb and I had better appreciation of boundaries at that time I would not have asked him to help me find a lover. But then there would have been no Book of Judith. The paradox of life!

The rest of today’s sitting still had to do with going to the movie – The King’s Speech – with Gloria, Peter and Mike. I need to sleep and so it’s difficult right now to say fully its impact on me. I was struck by how obvious it is that a good personal assistant, and the one who is supported, will love each other. I wonder when the world will realize how utterly authentic this is.

The other depiction that struck me was how the prince, and then the King George VI, up until he gave his great war speech, had to struggle to assert, even discover, himself both inside of being seen as defective AND inside of the utter imposition of being royal. As afraid as he was of being king he really could only be himself when he was crowned and when he mastered being able to use his voice. This moves me because I can only be myself inside of bringing Inclusion into view for others. Everything that has occurred in my life prepares me for this, even being seen as disabled. And so, I can sit for hours, overheated and in growing pain and stiffness, speaking words whose depth and insight seem to me to be strangely not entirely my own. It is who I am and who I am meant to be even if it wasn’t me who decided this was the theme of my life. My role is not to craft it so much as it is to choose it, and make from it its own authentic fulfillment.

Such an egotistical, yet natural, thing it is to feel that one has a mission – inspiring yet corny, dangerous and fulfilling.

The Prince walks with his therapist openly in the streets, unrecognized – maybe because who could fathom that the Prince would keep the company of such a lowly man. I wonder if there is a way that I can step outside of myself to see me as others do?

January 5, 2011

Yes, almost unbelievably, the repair man arrived at my Etobicoke apartment, from Pickering, before 9:00am and the chair was working by 9:15am. A loose wire somewhere! Thank God.

The new Executive Director of the Atkinson Charitable Foundation is a mother of two young children, and our meeting started a few minutes late due to her handling children’s needs. It made me feel a whole lot more comfortable!

Olivia is both a respectful listener and a great listener. She comes from a UK culture where disability advocacy is the rage – considered to be the ultimate activity for a person who has been labelled disabled. At first she gave me the impression of being dumbfounded to hear that I think advocacy can be a trap. By the time that our meeting was over she invited me back for a focused conversation about how she might guide the Atkinson board in the direction of Inclusion. We scheduled a time!

Right now seems to be a gestation period – a plateau. The difference is that this plateau is at a distinctly different – higher? – level than I have ever been before.

On the one hand people are listening and doing like never before. Mike is ACTUALLY preparing the book’s first draft with me; people ARE reading this blog; Kimberly is REALLY preparing to do tracker training; Paul is INCLUDING my support needs in his plans for developing Laser Eagles and CAVE.

On the other hand just as I am myself starting to give WPIT more of my attention Atkinson and CAVE are taking notice and offers to pay me to work out of town are starting to materialize. Could it be that I suddenly will have to choose – travel to make money and be heard versus sustainability at home while I/we give these new beginnings a chance to grow to new maturity.

Is it true that both – out of town expert and local, reliable leader – are possible? How can this truly be possible?

It’s late. Another short piece – I apologize. I think you get the gist. In order to not drop back and hide, to stand for “All of it” as Landmartians say, I need to be open to strategies opening up that right now I cannot imagine.

Good night!

January 3, 2011

There is a little tug-o’-war going on in me these days. The “I don’t wanna’s” are pretty strong – I don’t wanna:
- fundraise
- have a support circle
- cut down on gluten and drink more fluids – not caffeinated ones at that
- invite people to the Completion Evening of Wisdom
- catch up on e-mail
- set up paying gigs for February and March
- get my eyes checked
- etc.

I DO wanna too, and generally I am doing a little better than 50% which is the level I was at for years.

Why the ambivalence? Well, besides not wanting to “stick out” I realized as I was waking up this morning that I have been reluctant to be honest and open about my life-long sense, strong and clear since I was twelve, that I have a personal relationship with God and that God has given me a mission – to create Inclusion, especially so that people who don’t speak can be seen and supported as contributors to society.

But this is a fact for me – one that has shaped all my life. Still I cannot imagine saying in public, or in front of my circle, certainly not frequently and bravely: “Got wants this and I want to do it!”

This reluctance to sound like a religious weirdo constantly gives strength to the “I don’t wanna’s”. It’s better to not stick out, but rather to look like I’m motivated by good thinking and research, to seem like I just want the same things as most people.

But probably I am not fooling anybody anyway. Clearly I DON’T want the same things as most people!

Being at the Terracotta Warriors exhibit last Friday reinforced deeply for me the realization that most people do not know that there is an alternative path to peace besides war. The visible evidence was impactful - that fighting for a stable society and community with abundance and opportunity for all is a way of every culture that goes back multiple millennia. It was also powerfully clear that this way is wasteful, bloody and ineffective.

The other clear message was that history takes no account of the needs, desires or contributions of ordinary people. They live and die hearing that their sole contribution to peace on earth is to support war, up to losing the lives of loved ones and themselves.

I have another way. It takes many ordinary people to build and sustain Inclusion. The good news is that when they do so they also build abundant economy and community, and eliminate the fear and inadequacy that lead to war.

Can I gather enough courage, faith, people and resources to get the message across so that all ordinary people know they have a choice and they know how to implement that choice?

December 28, 2010

Mike has pretty much finished reading through the autobiography section of the 475 pages we assembled last week. Kimberly is reading too, and getting quite into it, as in she is upset about some of it! Interesting! Their reactions reconnect me with my story.

As editor Mike has suggested that I write about the end of Cycle 2 as a bridge into the central location of the book – Cycle 3. Makes sense, and at the same time, it’s a bit intimidating. It might take more than two pages. It might take time and effort.

But it’s TIME – time for this book.

So here goes, Mike!

I became conscious that another cycle had ended or was coming to an end at about the time of my 60th birthday. I am not clear. Recently I have been noticing that my memory for events from the time of returning from the 2008/09 tour – late April 2009 through my hospitalization in Oct. 2010 – is jumbled. I chalk it up to stress, the growing infection in my body and the actual effect of one Cycle passing into another.

The foundation of the concept of my life being in 30 year cycles comes from the belief – powerfully communicated to me when I was six or so - that I certainly could not live past thirty years of age. At about that time I was enrolled in a research study conducted at “Sick Kids” – the Hospital for Sick Kids in Toronto. From that point I was to take two trips every six months into a big city, by car, at a time when such a voyage was strenuous for every person involved – me, my mother and my father.

There are several elements of this pattern that created fundamental perceptions of life for me. The adult Judith has always struggled with the “obvious” conclusions that the child came to in these four trips every year.

First of all, I knew I must be sick. Why so much attention from doctors and big hospital people if I wasn’t sick! Secondly nearly every encounter was bookmarked by intense pain and loneliness, and at the same time a sense of specialness and intimacy. For example, on each of these mornings my father would get me up – something which otherwise my mother always did. He always gave me the special breakfast – boiled egg mashed up on buttered, nearly burnt toast – a breakfast that I looked forward to passionately. Once the appointments were completed my mother always took me for an extra special lunch. She never said anything but it was understood that it was her way of saying that she knew how much these trips were a source of pain and loneliness for me. Finally, the doctors always paid a certain amount of special attention to me and expected me to perform in some entertaining way. For example, they always asked me to tell them a joke on each occasion. I realized at a very early age that this attention set me apart in some way, and so as much as the actual occasions were difficult, I also at some level looked forward to these benchmarks in my otherwise boring life.

And so, the fundamental themes of my life were well established before I was eight. I was special, I was different, I was dying, I was to be treated painfully by every adult who mattered to me, and I had nothing to say about any of it, except to be ready to tell jokes and eat lots of good food. I was very chubby until my 50’s.

(To be continued…)

December 25, 2010 - Signing On Again

Well, I’m signing on again. It took two days to assemble 475 pages of stuff I have been writing since 1992 or so. Andrew K. printed off the pile; Mike Skubic is doing a quick read through to make a rough division between autobiographic material and theory. Then my real work starts – to pull it together and to write the necessary bridges to get two books ready for a serious edit.

Anyway, even with reinstating Farmville – under an alter ego, Alex Rooke - I have time and I missed writing, so I’m back!

Obviously, today is Christmas Day. Lots of eating! Lots of driving! Lots of Christmas songs and one Chanukah tune on the radio that either I have never heard before or were in “covers” I am unfamiliar with. Lots of stuff I don’t like but mixed in with all a string of moments and events that are whimsical, nostalgic, magical or just plain funny. It adds up to another memorable Christmas.

The good stuff:
- My brother Jim pulled off on short notice a truly family Christmas brunch, with Dad, Rosemary and Armand present, and Ian and Maude (still a little hung over from Ian’s 65th birthday celebration two nights ago!) Skyping in from Yuma, Arizona.
- A kiss and a beautiful red candle from Cristos.
- Being at Camphill Nottawasaga for Christmas dinner – a true feast.
- The setting sunlight on the forest trees.
- Getting the coffee stains out of my bra and shirt AND having a second red shirt to change into between feasts!
- Getting a new recipe for cranberry sauce.
- Having ten people LOVE the apple pie I brought.

I began to think that maybe next year I could pull off a Christmas that I would fully feel was “right” for me. Of course, as soon as the thought crossed my mind I began to back away from it. The mere effort to “make” something “right” can cause me so much stress that it can never be right. Just the same, besides the plain reality that Mom is no longer with us to set the pace and declare what the standards are, there are other missing factors that perhaps I could take on having in place.

I realize that I have not put my oar into the water Christmas-wise for some time. Last year I was too freaked out from Camphill having ejected me and the unanticipated return to Toronto. The year before that I was in Tybee. For four or five years before that I put all my energies into being on the Landmark Education Wisdom Year End Cruise. I am definitely out of the habit of designing my own piece of this December celebration.

Yet, it clearly is important to me. The day is no longer a religious essential within my spiritual framework, but it holds a sense of mystery just the same – the songs that say we can end war if we want to, the concept of the most vulnerable turning the world on its ear, the call to generousity, hospitality and abundance speak to me deeply.

So what would I put into my Christmas.

- a real tree, one that gives its life, and has scent and requires tending and cleaning up afterward
- a gathering to decorate the tree, and elegant ornaments to do it with
- an accessible celebration and feast on Christmas Day, where I am with parts of my family that never think of inviting me, and where I don’t worry all day about where and when I will get to the bathroom
- a personal assistant for the day that I want to spend the day with
- a feast that is generous, sumptuous and diabetic friendly
- some old fashioned, well performed, Christmas music
- some fun stuff like a Secret Santa present exchange
- a guest or two who would welcome an opportunity for a “real” Christmas

I guess I better get cracking making my Christmas 2011 happen!

December 17, 2010

I made $375 today. Tomorrow I will make $500.

I hope I have made enough to offset the cost of fixing the flat tire I discovered as I set out tonight to shop for Christmas!

As I lay awake this morning before Helen came to get me up I watched in the early dawn light while the crane by the “boxes” inside the railway yard fence drew up its cable. I watched for a few more minutes but it did not move again. The boxes had been rearranged a little overnight and there are new gaps between them. Beyond these alterations, and that the crane is facing the opposite way from yesterday, there is no change in the goings on of the marshalling yard.

I wondered – again – what is going on that must mainly happen at night.

Soon after I got up I counted the construction cranes visible to me from my bedroom window. There are six. Each one is distinct from the others in size, shape and colour.

Nearly always they stand motionless. One in particular has a motion of bobbing like a long-necked bird dropping its beak into a stream for fish. It has stood “beak down” for a few days now, looking very weird indeed. Together, when they stand still all day, they remind me of the dinosaur exhibit at the ROM.

Since I was in a counting mood I counted the different types of rail car visible in the yard. Again six. The large double decker orange/white/yellow passenger car belongs to a train called “Rocky Mountaineer”. (I drove closer mid-morning to read the indistinct words.) The remainder of its cars are black and white. This giant train has been here, motionless, for about a week.

Eighty percent of the cars on or moving through the yard are “Go Train” vehicles. These double decker conveyances are big, but not nearly as tall as the three or four cars of “Rocky”. The seven “Go Train” engine cars that are lined up in a flying wedge formation have not moved for about a week either!

The single story passenger cars of the “Via Rail” seem miniscule in comparison. However, they don’t hang around!

The rest of the train cars are flat beds – part of a freight train. Occasionally one will see the other sorts of freight car, but not today.

It is something of a mystery to me that so much valuable stuff – gigantic construction cranes, passenger cars, each with the capacity of a movie theatre, huge prefab buildings, sleek and fast engines – can sit idle for such long time periods. Certainly we are given to believe that the economy is run as efficiently as possible and that there’s an elaborate plan behind it all. But from the vantage point of my bedroom window I have a very different impression.

Have I stumbled across a train set that has been abandoned while some bored child of a giant takes an afternoon’s nap? Why does this huge child play only at night, or is it his father who secretly moves the blocks, cars and cranes around while his son sleeps?

I can only exercise my imagination – likely I will never know what is behind this great idleness. However, I am very pleased that I am a spectator to it all.

December 16, 2010

Sunday, Wednesday and tonight I spent considerable time with a child. It makes me appreciate SO much that I don’t have one.

He likes me, though, and I like him. Regardless I’m not set up for it in my living space or psychologically. It gives me new understanding why other people who use personal assistance have worked hard to create a particular type of support to help them raise children. Without that it’s a real challenge to get the kid to keep his sticky fingers off the keyboard while his incompatible “educational” game is threatening to melt down my operating system.

It seems like I have spent a lot of time and energy lately trying to reassert control – “my boundaries” as they say now. I noticed recently that I have greatly increased my patrolling – frequent trips through the apartment to ensure that things have been put away where they belong, room has been left on the floor to permit free passage of my wheelchair, Peter’s stuff is in Peter’s spaces, table tops are cleared of things whose purpose is incompatible with the function of the table – even regularly counting what’s left of the eggs, toilet paper rolls, tissue boxes, etc. In such ways I have become my Mother.

Part of this is because with Peter here, four other personal assistants coming weekly, a great deal of WPIT and Laser Eagles planning going on in the space and now intentionally offering hospitality to neighbours – including an eleven year old boy – everyone’s needs for safety, storage, secure work space, etc. must be met. Those needs may exist for an hour or for months. Once again, I have gotten fairly good at understanding and accommodating the requirements of my assistants. Adding a housemate and a half-a-dozen neighbours created a different dynamic that invites stress and chaos.

Another factor behind my increased control freakiness belongs squarely to the “Third Cycle”. Since it’s clear that I will live and I have a passion to get back in the game of inclusion, I must vastly increase my resources. I have about a $15,000/year shortfall in paying my personal assistants. I have large living costs. Lots of things cost double because of been accompanied – bus fare, meals, hotel rooms, rent. Most importantly the research and project development needs for WPIT will be/are significant.

I used to be very good at making money, especially when Marsha was around to remind me to keep at it and to promote me. Then I got slack. As the end of Cycle 2 crept up on me I grew content to live the life of a very poor person,

But Cycle 3 is now very much underway and I must leave the ODSP world soon – perhaps February. My intentions are set on a functioning Judith Snow/World Peace through Inclusion Foundation with assets not less than $6 million by the end of 2011!

I am learning again how to make money. I am getting coaching. I am seeing how I got stuck in lots of side tracks, from not wanting to lose my connection with vulnerable people to enjoying hanging out with the stories of how hard it is and in enjoying too much the dreaming of what we could do next.

What works is to take the action that reliably brings in the money. I set a goal of making $500 a day, five days a week. Yesterday I made $550. Today I made $100. Tomorrow I will make $500.

December 15, 2010

I don’t want to do this. I don’t want to do this. I don’t want to do this. I don’t want to do this. I don’t want to do this.

Childish, isn’t it?!?

It’s been one of those days. The good part was that I went to the pain clinic again and got to try a TENS machine. I was quite doubtful, but the 20 minutes I did spend on it were quite comfortable. I can see that it can be made easily portable. Perhaps it is a useful way to make travelling in airplanes doable again.

Other than that, Helen was sick, and because we only have cell phones around here, nobody knew until 15 minutes into her shift. It was a big disruption to Mike and then Peter jumped in. It’s been a long time since Peter did a day shift. Basically I was pretty tired by the time his 6 hours were up. He was going to go out but he was tired too and fell asleep. Then Mike got stuck in a traffic jam and I was alone, in pain again, for 2 hours.

I didn’t do the stuff I should have done. It reminds me of January when all I could do was sit and play Freecell because my brain was too bloody tired to imagine doing anything else. Probably I should just go to bed!

I don’t know if you’ve noticed yet, but I keep trying to make things work – to fix the broken systems. For years we’ve used a manual that we wrote ourselves, and that I update regularly, performance reviews at least once a year, sometimes more often, mentors for the staff, circle meetings, circle teleconferences, etc. In the end, things get fucked up just about as much as when I don’t bother. It probably would be a lot more helpful to me personally if I just accepted that things get fucked up. I haven’t been left stranded since about 1975, I haven’t died, I still have a home and don’t have to declare bankruptcy yet, lots of people admire my work and are inspired by me – and so far so good – I can still pay my staff. I can imagine that I could be satisfied. But I’m not! I’m grumpy!

I think it’s the money thing. I have written about it before a couple of times. Money used to come quite easily to me even though I took no particular pains to hang on to it. Now, it’s always a one month to the next thing. Largely I am very successful. 15 months in this apartment and the rent has been paid on time each and every month. Just the same, I get anxious when I can’t see beyond two weeks from now. I feel like I’ve lost my luck or my nerve or something. I get brought down by that funny feeling that somehow I’m not carrying my weight. I am, but I don’t feel like it.

It’s ridiculous and I know it and I’m almost ashamed to admit it. However, the weight is there in my head, in my words, in my language, in my thinking and in other people’s way of thinking and it has somehow crept into me.

It is my intention to not pay any more attention to it, and in fact to create something much more empowering. It is my intention to be at peace, and not brought down by this invented sense of scarcity.

At the same time, there is work to be done to find and/or raise the money that I need, and I’m not doing the work. That is what must change. That is what I am committed to.

Change is kind of a sneaky beast. I was looking out my bedroom window at about 11:15 this morning, waiting for Caleb to pick up his glasses that he left here two weeks ago. The crane that is between New Toronto St. and the GO Train tracks began to move west at a stately but ponderous rate – probably about 5 km/hour. It became apparent that it is also on one of the train tracks. Very slowly I was able to see that people were harnessing one of those very large grey cubes that look like a modular section of a prefab building. The “stevedores” raised the cube – maybe 3 feet – and then nothing happened for a good half hour. Was it lunch break? I had to leave and when I returned at about 3:30 the cube was gone, the crane was still sitting there, and there is no way that I can tell what happened. I will just have to keep on watching.

Will I master money in such a slow and invisible way? Will I wake up one morning and realize that I’m fully funded for my personal assistants forever, that I have an equally beautiful condo that has a similar view in the same neighbourhood that is fully paid for, that I am able to be generous with friend and stranger alike? So be it!

December 14, 2010

I don’t feel much like writing. It’s been a busy day – a Laser Eagles fund raising planning meeting, Laser Eagles itself where I painted five small pieces, a little shopping and finally a Book of Judith debrief. Interspersed were the usual things that add up to hours and hours of time allocated – getting up, bedpan trips, getting to, in, out and away from the car (especially in winter where cleaning the wheelchair wheels becomes part of the process), e-mail, (Farmville!), eating and preparing for the next – meal, day, meeting, project, assistant, etc. There are days and parts of days where one more interruption, thought, task, whatever seems much, much too much. Today has been like that!

On top of this is the nagging question in my head – “Am I actually doing anything?” Someone today asked me, “What’s new?”, and I had no answer except, “The ROM”, which she already knew about. Why is it that so much energy and activity is expended on so little? Even more, what compels me either to be always “doing” or asking “Why”.

Anyway it seems like a chore to write tonight, yet important to keep on going. It’s a commitment now, and keeping it helps me continue to have faith in myself.

Part of it is to keep on capturing the edges of this fabulous moment in my life when inclusion is emerging at an entirely new level. Here are recent examples:
- real progress with letting go and having something that I created and care about be picked up and nurtured by others – Kimberley with Laser Eagles, Mike with WPIT
- inching patiently through the structures and processes of the ROM so that they may genuinely be partners in creating something inclusive
- living in my home and neighbourhood like I actually want to and do belong here
- sneaking up on writing another book
- designing with colleagues a touring version of the Book of Judith that is authentically vulnerable and will draw host communities into the inclusive experience
- staying in a role on the Toronto Wisdom City Team for more than a few months, confronting what hasn’t worked and taking on reaching new successes.

Now a real question is, “Can I make all of this packaged in the sort of profile that I will get paid enough money so that my living AND enhanced participation costs are paid, and my personal assistants’ wages are covered ongoingly - deep into the future?”

Can my art and my writing make money?

Can my ideas, dreams and experience make money?

Why not? Somehow it seems more likely that they can and always could except where I have been putting unnecessary barriers in the way.

I have a friend whose advice I am seeking regularly about money who says it is simply a matter of saying what I am going to do to make money, then doing it. No more hype, getting ready, anxiety, whatever – just choose to do something, then do it!

I have had considerable practice with just that and creating these daily writings.

Now I will copy the pattern over to making money!

December 12, 2010

It’s really beginning to look a lot like Christmas. (I said that already – yesterday!)

It’s been a long time since I shared my “household” with another person, outside of the ongoing presence of personal assistants. Over years of funny and difficult events I have become relatively good at creating the physical, emotional and social space that my assistants need to feel centred in my home and car. Having a continuous need to maintain a workplace within the intimate spaces of my life is a delicate balancing act, and one that I enjoy ongoingly paying attention to. This endeavour quite literally engages a large piece of my emotional availability and is a fulfilling pleasure for me.

Having a housemate is another thing! I realized in the wee hours of this morning that Peter is on some sort of emotional/spiritual journey right now that requires this space to be nurturing and open in ways that I am not familiar with. In other words the control freak in me is getting triggered.

I was once married and I imagine that I might like this sort of intimacy again. Right now I am getting to see why I’m not in that sort of relationship!

The space that assistants need can be bounded by me in ways that are perceived by everyone as legitimate. My supporters, paid and unpaid, agree with me that the fundamental reason for their presence in my life is to ensure that I can both live and participate in ways that work for me. There are endless negotiations and at the root of them is always this center – my life and my participation. This certainty gives a way to find articulation and direction.

Peter is here only in part as a personal assistant. He is also here as a colleague in the community development work of World Peace through Inclusive Transformation. More fundamentally he is living here!

We end up talking about who owes what for toilet paper and food, how loud is too loud, who’s going to pick up what and when, what he should be wearing, and ongoingly about topics I cannot predict – “Do you want to sell these clothes at a discount and make money?” - at times I cannot predict.

Peter’s Father died recently and, as I wrote about yesterday, Christmas clearly brings us back into the arenas of our Mothers, and these are different arenas indeed! This morning I realized that I have front row seats in his unfolding awareness that he is now living beyond his parents.

I don’t mind – I’m just not “ready” – whatever the hell that means!

I think this is one of those “good for me” moments in my life. What I learn and become in this time and space will serve me well as a person who longs to be intimately available outside of my personal support structures.

I simply need to be clear about what my own emotional, physical and social spaces are and be skilful at negotiating them without force and fear, but in love and trust. It’s the being clear that presents my learning curve.

I will keep you posted!

December 9, 2010

One more article! (I promise I will write anew tomorrow.)

The Story
by Judith A. Snow, MA

Prologue
Many groups of people who are marginalized today have a history of their people that gives an explanation of present day reality. For example, African-Americans
and African-Canadians have stories that tell how their ancestors were enslaved and brought to North America. Stories tell how some were guided by maps encoded into songs as they traveled the "underground railroad" and escaped to freedom.

These traditional stories give current members of the group, especially the children, an explanation for the poverty, discrimination, exploitation and hostility
they experience in the present. As the child grows, she or he may reject these interpretations and adopt or invent others. Even so, the stories have served a purpose. The stories give members of the group a way to defend themselves against the negative stereotypes that are attributed to them by others who have the power to discriminate and exploit.

Even while the material effects of marginalization are being experienced, the child has an inner anchor to sustain a positive identity for herself or himself. It
can be remembered that it is not her or his inevitable fate to be so abused. The opportunity remains to find a way to work for greater freedom and respect.

Children labeled with disability come to this world as members of every cultural group that occupies this world. Almost always they are born to parents who are
not themselves viewed as disabled. Those who surround them are almost always unfamiliar with the fact that handicappist stereotyping disguises and renders invisible the person's actual abilities and contributions. Their parents have no story to counter the negative beliefs about bodies and minds that function in unusual ways. In fact, their parents may very likely be champions of these stereotypes.

In such situations children have no way of knowing that there are other ways of knowing themselves. They cannot know how to resist adopting these beliefs about themselves. In other words, a labeled child has no choice but to understand themselves as broken, as being a "mistake" or a "defect", as being fundamentally incapable and irresponsible, as being a helpless misfit who is less than able.

For better or worse, human beings are easily molded by and adapt to the symbolic realities that we proclaim to each other. If I say the little white pill will take the pain away, sugar becomes a powerful analgesic. If enough of us believe you are dying, you are very likely to die. Consequently, the child who is labeled as "disabled" inevitably becomes a disabled child - broken, helpless and unable.

When I was seven months of age I was diagnosed as having Spinal Muscular Atrophy, a form of Muscular Dystrophy. I was labeled "severely physically disabled". When I was six years old I remember my father telling me that some U.S. doctors were putting children labeled "mentally retarded" to death, saying
that society should not have to bear the burden of caring for these children. Dad, who grew up in rural England, explained that in his youth children with "mental retardation" were able to grow potatoes along with everyone else. They were a regular, accepted part of his community. But children like me were killed. People felt they did not have enough resources to support someone who would likely not be able to grow food.

My father's story was harsh. But that is not what I heard when I was six. I heard that I had enemies and that I had better pay attention. I heard that he and Mom were going against the mainstream and that meant they loved me and that we were all vulnerable. I heard that the way to gain acceptance among strangers was to contribute to the well-being of the community.

Outside of this one occasion I was raised without an orientation to the prejudice daily inculcated into my being. I was in my thirties before it really began to occur to me that I was my own worst enemy. I had adopted all the ableist stereotypes as being realities of my true self. Consequently I cooperated while others,
wittingly or not, hurt my body, deflected my mind, impoverished my circumstances, and diminished my abilities and contributions.

I have long thought that living as a labeled person requires the skills to live as an alien in a misunderstanding, often hostile, foreign territory. It would be helpful to have an orientation to the ways of the foreign inhabitants. I often have wished to have a reorienting story, such as might have been told to me as I sat in my mother's lap, still a babe, if my mother had known I needed such a story. I invented such a story.

The Story
by Judith A. Snow, MA

You are not from here. You are more like the people who are from here than they can imagine. But they find it difficult to see you for who you are or to like you.
You have chosen to live your life among these people. This is a dangerous choice. You made this choice because you love these people. They need you.

You must remember that it takes a long time for most of these people to see that you are alive, and that you have a heart, and that you are trying to give something to them.

Some of them will never see you as anything more than a puppet at best. You must find people who will see that you are alive. You must help them over and over again to keep on seeing that you are alive. If you do not help people to see that you are alive, you will fall asleep. The only life you will have is the life of a
puppet filled with other people's stories. They may grow tired of playing with you; they may break you; they may throw you away; they may destroy you.

When you find people who can see you, you must learn to live among them. You must learn to believe most of what they believe, and to act in most of the same ways as they act. People who can see you will tell you how to do this. You must listen closely and watch carefully even when it is tiresome. If you do not strive to become like them, the others who cannot see you will drive you away. Even those who can see you will not be able to hold on to you.

However, you must not strive to be completely like these people or you will break yourself.

While you are among these people you must constantly search for ways to hang on to your true self and your true way of being even while you are acting like others as much as possible. As some of these people get to know you better and better they can help you find your true self and your own way of being.

Be courageous in asking these people to help you be your true self. Be courageous in doing this even when it hurts you and when it hurts them. It is your way to love these people. It is your way to heal them. It is your way to help them renew themselves. It is why you are choosing to live among them.

December 6, 2010

I have been actively writing a brief for the ROM so tonight I will share something I wrote on April 15, 2009.

Struggling Out of the Disability Box
Recently I viewed the documentary “Shameless” which is a celebration of Bonnie Sherr Klein’s return to filmmaking after being rendered unable to pursue her career for many years by two strokes. The video is shot in company with four others who are similarly accomplished artists who self identify as disabled. The following is the text of my comments to Catherine Frazee who is featured in the documentary and who is a professor at Ryerson University’s School of Disability Studies. I am hopeful that she will post a reply.

“I feel estranged from the growing crowd of advocates with disability who are actively giving definition to the disability culture. I watched the video with longing and sadness, of course recognizing myself sitting behind you in the scene where you spoke at the Latimer vigil that cold February morning. I was not chosen to be a part of creating Shameless. If I had been asked I likely would have said “No”. I am not part of the Ryerson gang. Though I am an artist, and paint regularly along side of others who are considered to be disabled, likely I will rarely choose or be asked to participate in disability arts events. I’m not complaining – I exclude myself.

The watershed is simply that I continue to believe in and to explore the possibility that I am not disabled, and that no one else is either. This mission of mine drives a wedge between me and my colleagues, such as yourself who is avidly creating disability pride and disability culture.

Last night and today some thoughts gelled, so I write to clarify and share them, and hopefully elicit a response.

In Shameless Bonnie Sherr said something like: “Once I was a person who made documentaries. Then I was a person with disabilities. Now I am a filmmaker with disabilities.”

What struck me is how in this statement “disability” is pretty much equivalent to “making documentaries”, in the sense of being a vocation or mission. It’s as if Bonnie is saying: “My first and chosen mission in life was to make documentaries, my second, forced/surprise mission was to be disabled, and now I can have both vocations.”

This is interesting to me because I am currently struggling to get myself out of what I see as a career box. Before I became involved in disability rights and inclusion I was training to be a psychological counselor and also interested in Mathematics. The sort of life choices that you are very familiar with presented themselves, and from 1976 until now every career choice has been related to disability. Not to go into details, I am now strongly suspecting that I was recently refused a job due to discrimination based on….. It’s subtle. Certainly the discrimination, if that is what it was, is not a blatant refusal to recognize my abilities. However, my career history cannot document the explicit credentials. Of course it can’t – getting the credentials was never open to me. I have equivalent experience, but it doesn’t look typical. But there in lies the discrimination. Why does it have to look typical?

So disability can indeed be a career. But it is not my ability and function, or absent ability or function, that is the basis of disability as a career. Nor is it Bonnie’s alteration in ability and function. Bonnie is a top notch creator of documentaries, before and since her brain injury, as well as a superlative wife and mother. These are her careers. What makes “disability” a career is our society’s insistence that this is who we are – disabled!

When I examine the word and the concept I see three things.

1) Disability as loss of function – the injured baseball player is placed on the disabled list. Such a person is expected to recover the same functions. When a person such as Bonnie recovers to different functions, or Catherine and Judith build a life without every having certain functions, are we thinking about and experiencing the same phenomenon. I don’t think so.

2) Disability as career. (see above)

3) Disability as opposite or counter to ability. Is a Black person a non-White? Is a woman a non-male? Is a lesbian not a woman? Of course these ideas have existed. Mostly they have been put in history’s waste basket. Why do we choose to explain ourselves in these terms as if ability were a linear phenomenon and our job is to keep on explaining that we didn’t really get the raw end of the stick?

I am struggling in three ways. First I am struggling to know who I am – myself. To the extent that I can own but not be driven by the above named misperceptions, to fight but not be defined by the constant erosion of the supports I use to participate in life, plus not be dominated by the spectre of poverty always lurking and all the other life degrading cultural phenomenon we all face, I am in constant search to know myself as real.

Secondly, I am struggling to make personal assistance visible. I was struck by the absence of personal assistants in Shameless, though this is not meant as a criticism since the presentation was complete in itself. However, neither Pat nor Michael is a typical partner, and there are others besides Pat in your own life who assist you in your creation of your life. I believe that for others to realize that we are not bad copies of the people we should have been, the contributions that we make to those who assist, and they to us, must be made visible and celebrated in the world. This work is also part of ending the hegemony of individualism.

Lastly, I struggle with the invisibility in the disability pride world of those who don’t speak and who are usually labeled as “profoundly developmentally delayed”. Since the early ‘80’s I have intentionally sought to know and understand the experiences and contributions of quiet people - people who live nearly exclusively through the bodies and voices of others. Their presence and contributions are evident, but generally ignored, misrepresented and discouraged. From the “independent living” movement until now not many have been willing to acknowledge that “they are us” too.

I deeply wish that we had another set of words and phrases to express the infinitely rich sphere of ways that human bodies show up on this planet, and the wonderfully rich, uncountable contributions this makes possible. Such words would make visible that human ability and the careers we pursue are related, but not the same, phenomenon. Such language would give us a strong foundation for not just accepting and tolerating, but fully celebrating, diversity. Such conversational capacity would put you and me on the same side of this fundamental liberation movement.

But for now I am simply stuck with saying and writing that I am not and never have been disabled.”

December 1, 2010

Today I am thinking about money. ODSP cut me off last month – again – and although I was able to get reinstated with no great difficulty the deposit did not arrive in my bank until this morning. I would have been in the position of having to draw further on my line of credit to pay my rent if it had not come when it did.

As a child I considered myself rich, but I was very distrustful of money. In grade three I was “befriended” by a girl who was by far the dirtiest and most unsavoury character I had met up until that point. I was in a way her captive audience as I was wheeled about in those days in a manual wheelchair over which I had no control. I imagine that adults, including my parents, threw us together because neither of us had friends and they felt we deserved each other. One day Mother gave me a quarter and sent Darlene and I off to the library to register and get a book. Along the way Darlene took the quarter and with that sort of persuasion that goes: “You really want to do this, don’t you!” bought ice cream. I don’t recall eating any ice cream or what lie we concocted to explain why we came back without a book. I do recall the fear, intimidation and disgust.

As a young teenager my aunts and uncles, particularly Uncle Ted, would give my two brothers and myself dimes and quarters whenever they visited. I couldn’t get out to spend any of it and I enjoyed hoarding it in any case, so the stash in my underwear drawer grew to be $20.00 more than once. However, both my parents would “borrow” from my wallet with promises to repay. Often they didn’t keep those promises.

At sixteen the government of Ontario decided to give me a “Disabled Child Benefit” which meant that a small amount of money went to my parents on my behalf – something like $100 a month. When this started my Mother told me that I was essentially paying rent now and that I could ask for some things to be done differently. After that moment nothing changed and I never saw any part of the money either.

I know now that my parents paid out lots of money on my behalf and that they often struggled financially especially in the early years of their marriage. There is no person more generous than my Father is and my Mother was. These stories come to mind, not to put anyone down, least of all my parents, but by way of seeing why money means so little to me. I think I basically learned that money could get me into real trouble and that it never really belonged to me in any case so why bother thinking too much about it.

When I went to university the situation changed radically. First, I had a scholarship and secondly I had a benefit under the vocational rehabilitation section of the welfare department with “disabled adults” in its mandate. Thirdly, I had a different allowance from the same Ministry which gave me the capacity to hire students for a few hours every day to give me personal assistance. I had the great good fortune to be supervised by a social worker who interpreted her regulations in the most generous way possible. This meant that even when I worked during summers between terms, or sometimes mid-school year my benefits were never cut. I paid my own tuition, living costs, other people’s and my own beer and had friends!

Skip the dark years of the nursing home and chronic care hospital. $60 a month from the government as a “comfort allowance”. Even then I earned some $$’s on “the side”.

When I fundraised for, founded and became the first Coordinator of Special Services for Handicapped Students in 1977 I paid myself $19,000 a year. The University doubled the next Coordinator’s salary.

I did alright – never brilliantly – in the financial world until 2006 when I decided to retire from a job within which I could do nothing that made me happy. I had savings, a small grant from the Marsha Forest Centre, a small pension and I continued to have self employed income. I co-owned a house and three times renegotiated the mortgage over ten years to give myself another pot of money to draw on.

I left the job in 2006 to give myself a fighting chance to do what I really wanted to do with my life. That turned into being an artist and founding the World Peace through Inclusive Transformation.

I have NO regrets and I am on the edge of bankruptcy. For fourteen months I have marvelled month by month that I have found ways to pay my rent.

I wonder, and my friends do too, what happened to my capacity to have money. Now that I am writing this I see that I may have returned to thinking that money is something I have no control over and that it would pervert me through the Darlene’s of the world if I had it. But I am not eight and I have a very different perspective on what can make someone choose to be a dirty thief. I owe Darlene, her mother and mine an apology.

Now, let’s make some cash!

November 16, 2010

It was a good Laser Eagles day today. Of course, just about every Laser Eagles day is a good day. I enjoy being with the other artists. I enjoy working with a tracker – today my tracker was Mike Skubic. I enjoy the process of painting even when I don’t like the result that much. I don’t really like my last two paintings, but I’m not sure that I’m finished with either one of them anyways.

I thought I would start painting anger today. It ended up being a whole lot more yellow than I thought it would be, and a very bright yellow indeed. Paintings have a way of doing that – I mean turning out very differently than I thought they would be in the beginning. I have never really painted with yellow before, so maybe that is an angry colour for me. Just the same, it’s not what I thought anger would look like.

The other reason that it has been a good Laser Eagles day is that we had an organizational meeting and I was pleasantly surprised, perhaps even a little overwhelmed, at how it went. For one thing, I am learning to keep my mouth shut around Kimberly Fu who has an amazing capacity to say things quite differently than I would say them and yet end up with a similar or better result than I could have. In the last few weeks, the CAVE Board, particularly Paul and Bill, have gone from being kind of distracted and even a little resigned about the future of Laser Eagles to being very solid around the possibility of building and expanding. Paul in particular expressed a solid vision for having Laser Eagles be an organization that can sustain itself and be true to its mission. It was very easy to have him see that Kimberly should be the person who will stickhandle the next few months of shifting the organizational foundation.

I see where I have let some important aspects slip. In particular, it is much clearer now why it is important for the artists to sometimes use a way of showing to others that they are directing their trackers. Our familiarity with our trackers and, I believe, a certain laziness has caused us all to use methods of painting where it is easy to imagine that the tracker is choosing how the painting will go. Paul made it clear that others cannot actually see how the artists are making their paintings, and this is detrimental to the potential for fundraising.

Beyond that, the artists have never risen to the challenge of raising money or selling their art and giving the money to the program. I have sold a good number of paintings over the years, but have considered my volunteer efforts to be compensation for the supplies I use. Other artists have stacks of paintings sitting around in their bedrooms or have given some away as gifts. A few have sold paintings but kept all of the money. I don’t begrudge them the money but it is clear that they have not developed a sense of what it takes to sustain a consistent support system for themselves.

We have a real opportunity to show that we are capable of contributing to the organizational aspects of the world. I hope that we are able to actually grasp this opportunity at this time. It would be a big shift in the culture that we call inclusion.

Today I also had an insight into how I keep chaos happening in my financial life. At some point in the meeting I offered to do radio shows to promote Laser Eagles during the Christmas season. One of the CAVE Board members owns a radio station. Paul turned my offer down.

He pointed out that, without the organizational foundation in place, promoting Laser Eagles was detrimental to its long term stability. This is simply because anyone who might want to donate or get involved would not see accountability at this point but would see only our appearance of instability and – I guess what you would call “flying by the seat of our pants”.

How many times in my life have I gotten publicly enthusiastic about a possibility or a project and had nothing concrete to back up my enthusiasm! It is one thing for me to be a blue hat visionary. But visionaries cannot get very far on their own. And so, I have pushed away the very resources that my own life and my creations depend on.

Well, a new part of my history has begun. Cycle 3 has a genuine potential of being a time when I and others realize our wonderful ideas!

November 10, 2010

Today it is very tempting to give up my idea that this is about expression and simply to paste in some of the writing that I have been doing today, to try and sustain some order in my life.

At the beginning of all this writing was (and still is I think) a sense that Cycle 3 offered an opportunity for me to express myself in ways that I didn’t see or didn’t choose previously. I invented a distinction between expression and communication. “Communication” is all the speaking, writing, art work, etc. that I might do in order to influence, negotiate with and manipulate the world of people trying to get each other to do things with and for each other. “Expression” is speaking, writing, art, etc. for its own sake or perhaps for no sake at all! Of course there is no clear boundary.

Today I was writing email and ended up producing a large piece in defence of my financial situation and how I have managed it over the past – 28? – years. As the evening grows late it is tempting to simply paste in that email. The rest of the temptation is that the entire requirement to write that email came from another large message that questioned my situation and financial management. It pissed me off royally and I would love to just take a virtual slap back at the writer by making the whole thing public. Of course it’s going to get public anyway – this particular email that I responded to was sent to nearly every member of my family.

So what am I actually angry about?!? I think it is that (sucky baby?) I am unwilling to explain and defend myself, what I believe in and the pathways that I have chosen and WILL choose to fulfill my life.

It would be blissful, although clearly naïve, to imagine that in Cycle 3 I have gained enough trust and permission to do as I please without question. Sigh! It is not to be, is it?

At the same time I don’t want to get sucked into filling these two pagers with communication. Even though lots of people read these, the point of doing this is not to promote my “case”, but for me to actually get to see what my case is. As a friend said this morning, these writings are like verbal collages. After they are done and often in the process of doing them I get to understand myself and my world with a fresh perspective.

A strong theme has emerged in the past week. I have received many, many gifts over the years and particularly in the past few years as I have been living on a limited government pension. Many of these gifts have been financial. People who give me money frequently seem to feel that they are helping me out of a crisis. I believe that in the past I have actually believed myself that I was in a crisis. I guess I sometimes was!

The truth is though that there is a distinct difference between being in a crisis and being able to benefit from other people’s generosity. To define it somewhat simplistically – a crisis is when I am out of options. Many times when I have requested money from others or accepted money that wasn’t requested the appearance of that money has seemed like a very good option or at least the best option at the time. But rarely was it the only option. In other words, I have felt that I was making a choice in accepting the offer and not in any way agreeing to give up my capacity to choose what my next step in life would be.

It has become quite clear in both trivial and larger ways that many times people who are giving me money are then expecting me to make similar choices that they imagine they would make in my circumstances. In fact people often feel the right to insist that there is a path that I should take. Consequently over the years I have collected a number of people who are close to me who carry a bag of stories with them of how I have somehow failed to keep up my end of a bargain – a bargain that I was unaware of or only dimly aware of making.

Once again, I have no interest in blaming people for this. Even more so I have no interest in continuing the pattern. I see that it has been part of a convoluted pathway that leads me to either make poor choices or try to avoid certain situations or take on more than is good for me to take on or try to do things that I don’t want to do or to do things that make no sense to me. In another blog called “Ah, but that’s another story” I have written about how the process of receiving the benefit called the Ontario Disability Support Program limits and warps the lives of others who have been labelled disabled. I am now beginning to see how receiving largess is affecting me in similar ways.

I imagine – I dream – that I can gather the people who have been and continue to wish to be generous with me in some sort of large dialogue, and see if we can come to a basic agreement about what is the purpose of their generousity and what do they actually expect of me. This would give me the choice to turn down some people if the expectation is too different from the life that I intend to live. On the other hand it would give others and me a chance to be honest in a way that has not been possible in the past about how I make the choices I make and why I do some of the things that others find so odd.

I believe that people would come to realize that I largely steer my life through three lenses. The first is a strong sense that I have always felt that I have a God given purpose – a vocation. This sense is shifting strongly – I have written about this previously. I feel that I have more space than ever to have a personal enjoyment of my life as well as vocational accomplishment.

My second lens is a commitment to be served by my personal assistants in a way that benefits them and leads them to be able to live their lives more strongly conforming to their own sense of what is right for themselves. This leads to some intense dialogue and deep relationship – not with everyone of course – but with a large number of the people who have been in my life over the years. Many choices that I make are in the context of supporting these relationships.

The third lens came to me when I was twelve years old. I was sitting in the back of a church, behind a sea of adult heads, unable to see the minister or any of the activities that were taking place. I was miserable having recently been thrown out of Girl Guides because of my “disability”. I was encountering other barriers as well, and was rapidly learning that the world planned for me to fade away in a small room in my parent’s house.

I heard the minister read that God is love. It occurred to me that either this was a heinous lie and God had no interest what so ever in me or that God would participate with me in opening pathways for me to live a full life. As full as I was then, and now, of passion to have and do it all, I could not imagine the hell that lay before me if I was to be stopped at every turn.

And so on that day I choose to believe that God is indeed love and that that love would be expressed in my life by my always being able to find a way.

Of course how I see God now has changed from when I was twelve. However the principle upon which I live my life has not changed. I believe based on no evidence what so ever, but simply as a belief, that there is a way and I will find it. This has always given me the courage and the permission to pick up pieces, look for new pathways, make new friends, try new projects, ask boldly and otherwise live in search of possibilities that I do not yet know exist.

But the extreme way of looking at it that a twelve year old had perhaps is not the best way to look at it now. Perhaps my friends and family and I really could work out a way that would take out some of the concern and distress that they feel for my safety and sanity and still leave me with the freedom to choose new relationships, opportunities and pathways as they show up day by day.

I am looking forward to this dialogue.

November 4, 2010

Today was a total rest day. At 10 o’clock in the evening I have not been out of bed today except to take a warm, delicious bath.

Somewhat against my will, I realized that rest days must be built into my life on a far more regular basis. There was a time when I consistently had three rest days a month, although resting meant staying in bed only until 3 pm. I pretty much gave up this practice when I went to live in the trailer in the southern United States. When I returned I gave it up entirely.

Now that I have learned that stress is a major part of the feedback loop that leads to intractable pain, I have begun to review my history in terms of stress. It’s not exactly a point of view that I prefer to look from. Generally I prefer to look at my life in terms of accomplishments or transformations or even neighbourhoods and spiritual passages. However, it seems that there has been a certain amount of denial on my part of the factors that have worn down my physical body and occasionally my will power as well.

In the hospital when they were putting in the PICC line, I was struck by how my veins shut, seemingly in an effort to prevent the catheter from passing through them. This was considered to be somewhat remarkable to the radiologist who was performing the procedure. I also noticed months before I ended up in the hospital how frequently my leg muscles were tight or how difficult it was to release my bladder or how frequently some other part of my body like my neck would be stiff and tight. Looking back I realize there were plenty of signs that I was stressed – lots of straightforward signs of wear, tear and exhaustion.

I recall in January sitting for hours in front of my computer not being able to muster the willpower to do more than play Freecell even though I had hours of work to complete. Eventually I realized that this was not so much procrastination as emotional and physical fatigue. Even so, I did not know how or was somehow unwilling to respond sufficiently to my own stress.

The entire story of seven months, even 9 months if you include our preparation, of the World Peace Tour could be written as a story of stress. It doesn’t seem right or necessary at this time to go into a great deal of detail. Suffice it to say that there were layers of financial burdens that we struggled under as well as a myriad of personal conflicts to work out both before and during the entire trip. Added to this was the global economic crash that set in the same week that we left. We had the mechanical difficulties, health difficulties and a number of the contracts that I thought I would have to rely on as sources of connections and financial stability fell apart soon after our departure.

We made it through brilliantly and learned a great deal along the way. In the subsequent months we learned even more as we discussed our tour with others and reviewed our experiences. At the same time the stress never let up. Understandings and commitments broke down leading to loss of home and loss of much of the photographic and video record of our journey.

By September I was rebuilding my life in terms of home, money, personal assistants and even in some respects my very identity.

I can look back on this time as a huge opening as I found a home, a neighbourhood, a staff team and way of living economically which is by and large working beautifully. I can also look ¬at the same time period as a relentless series of crises that took their toll. For example, throughout exactly the same time – November 2008-September 2009 – my swallowing became compromised, my diet became limited, my bladder was stressed with stones, I developed back pain, my funding for personal assistants was nearly taken away from me, I had to train a new staff team and learn a completely new payroll system as well as advocate for limited time to travel out of the country. I was seemingly unable to stop and breathe as each and every one of these problems had to be addressed as a crisis.

So, now I suppose I have a little bit of breathing space given to me by the ultimate crisis of no longer being able to sit up. I get to lie down and look at how can I more effectively get outside of the stress zone and create a peaceful environment for myself, especially my body.

I had an insight this morning when I was talking with a few of my Wisdom buddies (Landmark Education). I realized that I had lived my life as a skilled manager of my body. I have not actually been present to loving and enjoying my physical self. There have been moments of course – very little in life is black and white. There have been moments of hot tubs, long walks in beautiful places, cuddling up with someone, etc. But by and large these have not been frequent; neither have they been my focus. I generally opted to maximize my social and community participation and did not consider to any great extent my personal experience of life.

Don’t’ get me wrong - I don’t feel deprived. I have clearly benefitted and utterly enjoyed the extensive amount of travel and participation that were part of Cycle 2. No, this is more of a realization that there is another dimension to life that I have not made available to myself.

One of the gentlemen that came to my birthday party is a clown and a house painter. He was telling me about how he actually mixes the colours of the paint which he uses when his contractors give him the opportunity. He clearly takes pride in creating subtle shifts in his hues and tints. I realize that there are several areas of pleasure that are already open to me where depth of exploration is possible. I paint and I can learn about and experiment with colour much more. I listen moment by moment to rich sounds in my neighbourhood and I can easily enhance these experiences if I merely take some time to do it. What about other physical experiences? Probably there are people in my life who would support me to explore these dimensions as well.