January 29, 2011

Gloria had a fabulous idea today. She suggests that I take all the entries I have made about the cranes, cubes and the prison which is rising before me and make them into one article and publish it – somewhere like The Globe and Mail.

I will do this, but not tonight.

The doing of this is related in a number of ways. First on my mind is to develop the capacity to be calm, courageous and to celebrate life in the midst of all that is life destroying, horrible and disgusting. My automatic response is to ignore or run away. Truly I want to do neither. I want to be able to continue to look out my window, to be a watcher as my Mother was, and to celebrate the fabulous variety of insignificant events that continue to emerge moment by moment just outside my bedroom window. I want to continue to love living in this odd neighbourhood, so close to the lake, so “underdeveloped”, so human. I want to paint the emergence of life around me. I do not want to stop seeing and I do not want to have to go away. These are ways of the past that I have been able to rise above. This is my personal legacy – to be able to be where I am and be who I am whether or not I am afraid.

From another perspective it is too simplistic and fundamentally not true to say that this prison building is wrong. It is very much not what I would choose, but this is not the same thing as being wrong. There are many dynamics that bring about the global economy that result in Texan prisoners building cubes for Ontario prisoners to assemble and live in. I would prefer that people make different choices, and organize themselves differently in the awesome, largely unconscious, effort to work together around the planet. Just the same, although the results of this effort seem so contrary to life and its affirmation, still it is life and living people that are bringing it about. I do not understand and perhaps understanding is not an adequate response or approach. However, in my not understanding I can still appreciate the awesomeness of what is beyond me and my capacity to understand.

I have spent most of my life in a conscious choice to make a difference that I call Inclusion. I feel that this choice, this calling, is in some kind of coordination with the eternal impulse that brings life to the world – often called God. The rising presence of a massive prison in my backyard – rising night by night as I sleep or don’t sleep in my bed – can it be accidental? And even if it is accidental is it not something to which I can respond? What is before me at this time is to discover the response that I can make that forwards the conversation called Inclusion because that is who I am.

If I write my life with a large brush then it seems that Camphill fell through and my finances fell apart so that I might end up in this bedroom looking out this window at the very time when this prison is being assembled. Of course, I could say the same thing about other elements of my life – for example, that Gabor turned against me so that Mike would come to fill the empty position, or that I would have to turn to ODSP so that I would be in a clear position to choose powerfully how I accept or do not accept the next plan from ACF, or that I would contract a life threatening infection and have five doctors deal with it ineffectively so that I might end up lying and looking out this window for nine weeks. I am sure that many would say that I am far too full of myself to write such a major role into my life script.

On another topic, tomorrow is the day that I set to choose if I am leaving for Savannah, or not, on February 12. It seems that we are about $4000 short of what it would take to pay Mike and another assistant separately from the CILT based fund for my personal assistance. The value of doing it this way, besides keeping the peace among myself, CILT and the Ministry of Health, is that I would recoup a large part of the overspending of this account that has happened in the last seven months.

Unfortunately, no such amount of money is forthcoming for all the usual reasons. It is certainly not for lack of looking for it, although I’m sure there are sources that I have not discovered or touched. For the last six weeks I have kept a chart with happy faces and stars to reinforce my efforts to find money. The chart has helped. I am now more than likely going to earn enough money each month this year to be able to pay back some of the ongoing debt I am in, and to travel to some important engagements like the Conference for Global Transformation in May. Just the same, the money for Savannah is not there today. Of course, it may show up tomorrow. It would be awesome!

What would I do in Savannah? Paint “Dirty Window” and have it ready for the ROM exhibit. (This is the painting of the rising prison.) Catch up on what’s been happening with people who are struggling to be economically included in the most racist place I have ever been. Re-immerse myself in an explicitly Christian environment that somehow moves me deeply. Hang out with pelicans during the month before all the tourists invade. Speak to people about what I have learned and questioned in the two years since I last spent time with them. Enjoy the car ride down and back – a time that always allows me to pull my thoughts together. Eat fabulous southern grits and BBQ and other foods rarely encountered in the cooler north. There is so much more that I can hardly imagine that three or even five weeks wouldn’t pass by in a flash.

But it seems, at least tonight, that I am not meant to go. Seemings can be wrong. I sure hope this one is!

January 22, 2011

I am about to prepare the proposal that I will put before the ED of the Atkinson Charitable Foundation (ACF). I recognize that I have a highly emotional response to her request of me. Clearly I am reactivated (or stuck) at more than one level! So, I thought that I would use this blog – this expression vehicle – as a way of writing her a personal letter. Then I could write her the straightforward proposal. I can also suggest that, if she is interested, she read the blog, although that seems pretty risky at the moment. Of course it couldn’t seem so risky if I didn’t feel that much depends on how my working relationship with her turns out, and what each of us is able to accomplish by working together.

I am sure that this is just the sort of thing that Gloria wants me to face and transform in the context of. She is always saying I can’t give anything away, as in permitting others to run with the ball after I have set a direction. I don’t think this is true but I do recognize that I am not the best judge! So these are the words I would say to the new ED who is curious about me, maybe even hopeful about me, and who holds the key to what my next project will look like, perhaps.

Dearest O,

(It always seems that such letters start with “Dear” or “Dearest”)

I have been struggling with how to frame a project to put before you by Monday morning. Saturday evening is about to arrive and I only have the barest outline in my head. I am frustrated, angry and hopeful. I am trained enough to know that I’m not really responding to you, but to a series of former relationships and opportunities both lost and fulfilled which have shaped my life, my understanding of Inclusion and my current “mission” in life. It seems to me that you are interested and that you hold a key to potential progress. However, both my sense of what is a key and what progress is leave me with a feeling that you have undue power over me at this moment. I am reacting to my own “helpless identity” in the face of your “power”.
In the eyes of the world, you are black and I am crippled. We spoke euphemistically about these realities last Wednesday. I explained to you that my relationship to this point with Atkinson has been as a “window washer” – in other words, my circumstances have lead me to a certain kind of work in the world and consequently people imagine both that this is the kind of work I want to do and also that it is the only thing I’m good for. Accordingly, when people want to include me, support me and/or honour me, they offer me another window to wash. This is exactly what I FEEL like you are doing now.

I have been so tempted to ask you if you would like to make some pancakes.

Specifically, I stopped wanting to be an advocate in approximately 1991. I took it up again in order to support the Individualized Funding Coalition of Ontario. In 2004 we were offered an opportunity to “consult” with the Deputy Minister of the Ministry of Community and Social Services in Ontario. I participated fully! I did so because, even though I figured there was very little chance that the work would lead to real policy change, I felt that there needed to be as good as possible a document that recorded for history the benefits of individually supported community participation for people who are labelled with developmental disability.

It is nearly impossible, as you know I am sure, for people to build full participation with minimal resources, including some that are illegally established. Secondly, this power is further diminished by the intense bureaucratic overlay that comes with these resources. Add to this the intensely inadequate capacity to do good research when all that is available to do the work are volunteers, no control group, no standard definition of anything, and tight deadlines to come up with data and analysis. In spite of this, the IFCO managed to produce two reports that each had “eyeball” significance. In other words, you could see by just looking at the data that there are huge differences in how people who have individualized supports participate in their communities versus people who have agency support.

Shortly after we produced this data, the Finance Ministry of the Province of Ontario shut that Deputy Minister down, had him reassigned, and put in place an ineffective puppet. All evidence that the government might move towards individualized support for people who are labelled with developmental disability disappeared overnight.

The hidden consequence of all this, at least hidden to the Ministry, the bureaucrats and well meaning people such as yourself is that the people themselves who are labelled lose at every step of this process. First of all, they lose relationship with their parents and caregivers as these people exhaust themselves with extra work, and the process of being drawn into defining their loved one as a needy disabled person. Secondly, they lose the opportunities that disappear while their caregivers are busy doing other things rather than going out to the library, the park, a volunteer job somewhere, church, etc. etc. Finally, as the bureaucrats dash the hopes of the advocates and burn them out, they lose the energy and commitment of their parents and caregivers – the main source of support in their lives. How many people end up in a worse situation and in group homes just because their parents became advocates and then burnt out? I have no idea what the number is but I am sure that it is not small.

I was not, I believe, turned into a cynic by this defeat, not just because I was expecting defeat but because I knew that people could not be satisfied unless they had tried, and try we did. My intention was to support the effort as best as I could, not imagine that we were somehow going to buck the bureaucracy and actually make a change. At the same time I very much intended to never pick up the banner of advocacy again!

Lo and behold one should never say never! Here comes a very energetic, intelligent and passionate ED who is more than willing to make pancakes. Who am I to say that she is not correct? History has funny turns and I am not the one to say that this is not the time in history when a new voice and new energy might actually shift the social perception of people who have been labelled developmentally disabled.

You remind me so much of an energetic and passionate woman that I met in 1978 who turned my life, and many people’s lives, around. I hated her for a good six months before I fell in love with her and proceeded to do anything she asked of me because somehow around her things really worked out. For example, although we are far from having genuine Inclusive education in Ontario, the bureaucrats have never been able to kill it either, and that has a lot to do with Marsha Forest, who so inspired and so kicked butt that her influence continues 11 years after her death from breast cancer. I can only hope to have such power as Marsha had.

So, you say, it is time to gather the advocates and to have them start talking to each other and to have them begin to create a common identity and a common approach. Do you know that that is exactly what Marsha inspired in our city in 1980 to support our powerful engagement with the system during 1981, the International Year of the Disabled Person? The impact of that conference reverberates to this day in small but fundamental ways.

I can hear Marsha’s voice saying quit your bitching and get writing. This is an opportunity not to be missed.

Alright then – Let’s get on with it! Where’s that pancake recipe?

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 16, 2011

Within myself and within my circle there is an argument about how to unfold WPIT. By the way I think we are close to changing the name – to something like Include.Me.org.

My certainties are based in some simple stories. They are stories from my own experience. Of course there is nothing unusual about this. All humans build their lives from their experience, their stories within the contexts provided by culture.

The story of my Father and the binding of ancient female children’s feet provides me with certainty that Inclusion can only be built on a foundation of Giftedness. His story of the killing of children with Down Syndrome (when I was 6) gives me the understanding that I have a “mission” and – more recently – that there must be an economic foundation to our approach to Inclusion. My encounter with the reality of God’s love when I was twelve gives me a greater understanding that I have a unique path, and that there will always be a way for me to enjoy my life, be fulfilled and bring about Inclusion. Then there was the day Dad told me to pay attention to where my clean laundry went, and I began to see that I could direct my support, and so the relationships and tasks of the daily life that would be my journey.

I am uncertain where the idea that peace is available through Inclusion comes from. There is no stellar tale. This frustrates me and is perhaps the cause of the slow development of this “project”. In the 80’s and 90’s an aggregate of stories coalesced in my experience and I began to see the potential socio-political transformation that would lead to greater peacefulness as communities became more inclusive.

To me it is not about personal peace although that is tied in and important. It is about cultural peacefulness. After all, the Scotties, Felicias and Eddies are everywhere and if their Giftedness is included powerfully, peace will break out everywhere!

Without a strong story I am not communicating powerfully. So it grows slowly and has weak roots.

I have been looking for a strong enough story. I have been hoping that I could find or build it through research. Apparently this approach is too weak. I must find it more clearly in my own stories and experience.

Perhaps it resides with my Mother. This seems unlikely.

So tonight I commit myself to give birth to a story that links Peace and Inclusion so powerfully that people’s hearts will be opened. Gloria’s message to me tonight is that I will not find that story in research, economics or my head. The story must reach those understandings, but it must be anchored in my heart.

Right now the story is simply missing. There clearly a space and a need for it, but where the story should be – in my mouth and heart – there is simply silence. Of course, silence – my silence – is the perfect place to begin the exploration! The path has always been linked to silence.

Perhaps tomorrow I will meet the person who will show me where the story lies within me.

January 9, 2011

As I was going to bed last night, Mike assisting, after staying up a little late to blog, I thought that the day had been so fulfilling, so replete with authentic experience, that I could happily die with no regrets. Well, I didn’t die. I awoke to a day of more video taping in my winter coat under camera lights, more Farmville, more apple pie, and beautiful sunshine. The vision out of my lake facing window was just like so many of those Christmas card scenes with brilliant sun shining on neat and even tiny houses with perfectly snow covered roof tops!

I got so tired today that I actually fell asleep momentarily during a pause in the taping. Just the same, finally, Michael, Sarah and I reached an ending to the play that we all are excited about. It is in the camera. The editing can happen. I do not have to travel with the play unless I want to.

At the same time I feel the pressure of how structured I am making my life again. Each of my chosen task areas could use whole days in and of themselves to “do” them with research and thoroughness. WPIT, painting, blogging, the ACF Inclusion Circle, travel and workshops, Wisdom Graduate Liaison, the Robert Cooke Coop, attending to the gifts and needs of my staff, not to mention the Individualized Funding envelope upon which we all depend, Farmville, time with my Dad, time watching pelicans and construction cranes – I can’t keep up with myself, and to just give each of them “a lick and a promise” (there’s my Mother again!) fills my day from 6:30am to 12:30am.

Yet I don’t seriously intend to change a thing. It’s all too rich!

A clone? Would it really give me “more time” or would I just expand to nearly burst two lives – not just one?

So often I feel like I never left off being four years old. I just want to play and eat. I do NOT want to go to bed no matter if I can’t stay awake long enough to get there. I want to get into everything, leave the messes to someone else and find out how everything works. And I never really mean to do harm.

Four is compelling and passionate, creative and fantastical, and NEVER reasonable. Four doesn’t have a style, a culture, a career, a financial plan, an ethic or a long memory. Four is optimistic. Four makes and loses friends easily, forgives easily and is easily forgiven. Four is able to bend a long, long way before breaking.

Four is also right on the edge of losing that openness, of becoming fearful, judgemental and certain, of narrowing the options and playing the game. It is nearly the moment to find out there is no Santa Claus.

Then it’s a long, long stretch until maybe, just maybe the adult becomes willing and able to be responsible for creating a world within which she and everyone she touches can be four again.

I want to be, and sometimes am, that adult. It is good!

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 18, 2010

I made $0 today. Dad paid the $26 to fix the tire. Tomorrow I will make nothing and on Monday I will make $500.

I rested today, levelled up twice in Farmville, did some Wisdom preparation for our course completion night, some ROM related stuff, and visited with Steve for a couple of hours. Then I went Christmas shopping with my hyper eleven year old friend, Kevin, from down the hall. His mother, Sherry, practically worshipped me when I picked him up. I can only imagine that he is a handful – the kind of child that REALLY needs a whole village to raise him.

Yet having him around as he has been for the last eight days feels good mostly. Boundaries are needed – yes. I amused and shocked myself when I first saw that he had taken a half a pie out of its box and put it on his personal plate! There was no measured thought in my parent-like response to that one! But both the wanting to and being able to effectively intervene were right there, and it felt good! Yes, he can be safe with me.

Otherwise we rode in the car, shopped at a used everything store for Christmas stuff and ate together. I learned that the current word for “very good” is “Bam”. It feels good to know that too.

I realize that I present questions, suggestions, alternatives and explanations to Kevin that often make no sense to him or of no interest. Tonight I decided that this is not a problem. I recalled how Dad talked endlessly at a level usually just out of reach, and continuously presented reading material and other information that had nothing to do with my reality. But he kept in touch somehow with my world as I think I am with Kevin’s. I think this because Kevin keeps on coming back for more.

When I was ready and willing to be available I had Dad’s world already with me. So I felt OK today with explaining to a fidgety eleven year old how one gets a driver’s license while he wasn’t listening or comprehending much, yet was also hanging in for the whole experience.

A poor kid with labels based on his perception differences with a great Mom in a bunch of fractured relationships – half a hallway away. It has taken fifteen months and two parties to find them, or rather, for them to be willing to come close. I held those parties with Peter’s assistance because of genuinely believing in WPIT, Giftedness and John McKnight style community development.

I feel like I am on a number of thresholds and that something is breaking my way. Can it be that once again the universe is willing for me to have my dreams come true? Actually I imagine that the Universe has always been willing. It’s just that it is never just about me and so whole worlds must shift for things to line up. They are shifting.

Perhaps the Universe is with me as my Dad was with me when I was ten, or as I am with Kevin now. It is presenting me with the dream, the world and the pathways. However I can only dimly catch the drift right now. Just the same I am getting that there is a drift to catch and I am willing. Is it possible that I am now also close to being able?

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!