Frustration looks like not being able to remember a Morse Code symbol that allows me to type on my own at my computer, and having to find the chart and look it up even though I have known this symbol since 1986. Impatience looks like the fifth day in a row of birthday celebrations and wishing it would STOP. Annoyance looks like my personal assistant making the same small mistakes and faux pas and being alert enough to feel thwarted!
This is exactly what I wish I weren’t! It seems that the recovery of energy, awareness and drive brings with it the restoration of an impatient, grumpy Judith – not satisfied, not blissful. I expect this isn’t news to anyone who knows me well.
I notice as well that now that I know some people are reading these posts, I am writing them with my imaginary audience in mind. This was not the original idea! The idea was/is to play with EXPRESSION, not COMMUNICATION! Of course there is no actual boundary that divides what I express as my genuine self and what I say, write, paint, etc. “in order to” have a certain influence on someone or something. Nevertheless it is clearly sneaking in – the question: “What will others think of this?”
One way this happens is through others’ queries. As soon as I have figured out something of my own expression it is likely that someone will ask me something like: “How is it going?” or “What do you think about…?” and my recently acquired expression/insight is a natural part of the response – I would have to keep perfect silence to create a boundary in this process!
Another pressure that reinforces the drift from expression to communication is that while I have being resting, pondering, lying around certain dreams have become clearer, like my passion to continue to have trackers and to paint. As this is clarified the recent interruptions in the meetings of the Laser Eagles Art Guild, and the fact that I no longer have a regular tracker become urgent circumstances that I intensely want to do something about. Instantaneously communication – “What can WE do about this?” is called forth in me.
So we are really not separate are we?!? Passion leads to negotiation – a continuous flow of energy among us.
In case you are wondering – Hi there audience! – life has been very busy during these past few days. This morning I dealt with finishing putting up the blog and various requirements from email. Then I got up to meet with my lunch companions, Alice and Philip Natiuk, along with Mike who was my personal assistant most of this weekend. We paused in our eating to welcome Elizabeth Chan and her husband Robin. Robin brought some homemade beef barley soup and we feasted some more. The common link among these people is inclusion so we talked for a good hour and a half about WPIT and the BMX Model of Inclusion. By this time my brave attempt to sit up without morphine collapsed and I had my first dose of the day.
By the way it’s not really brave, I realize, to refuse pain medication when one is most certainly going to be in pain, but as I have said before, the dulling edge of morphine interrupts a lot of what I like to do and so I foolishly keep trying to get along without it.
Soon after they left, Kevin arrived and Mike, Kevin and I and later on Peter as well, talked about how to design inclusion-based video games. This is a new project that is rapidly taking on real structure inside of WPIT. When Mike’s shift was near its end, Kimberly arrived to pick him up and so we talked about revitalizing Laser Eagles, for ten minutes or so.
The evening is quieter but not without its moments. Lorraine called and we talked about another of her friends who is ill, about my birthday parties and about my upcoming test on Tuesday. Oh yeah, at 9:00 this morning Bill Worrell and I reviewed the questions that he is going to ask the urologist before I go into the clinic.
So this was my day of rest!
As you can see I’m not really shifting gears as much as might be good for me at this time, and in particular in a way that might lead me to be less outwardly driven. Cycle 2 is very much alive and kicking at this moment inside of Cycle 3.
Well, I’m not going to do anything about it tonight. I do believe that the process of writing these two pages will eventually lead me to an opening, or more than one, to create inner balance. The quest has not dropped off my agenda.
Sunday, October 31, 2010
October 30, 2010
Today I used my maximum available doses of Morphine. In so doing, I was successful at participating fully, sitting up, at my 61st birthday party. A multitude of people came from as far away as British Columbia and as close by as the same floor I live on in my Co-op building. It was all beautifully orchestrated, a lot of fun, and yet another demonstration of abundance. I am not the only one who is over fed today.
The third dose of Morphine was to give me the capacity to finish my dinner and do my writing in bed, this late evening. Writing and Morphine don’t go so well together in my little body. I have heard that it enhances the artistic experience in others. I have not found that intoxication of any sort assists me in that way!
Today’s party and the last few days of Facebook acknowledgements have more than amply conveyed to me others’ appreciation of my existence and my contributions. I am affirmed, a little overwhelmed and a touch frustrated. I have reached the point where several plans are emerging. It is clear that my continued contribution is desired. At this point, my body is far, far, far from being up for it.
There is a somewhat macabre thought running through the last few days. Tomorrow is Halloween so perhaps this is all appropriate. I have thought in the past that I would love to have a great funeral but – Dammit! – I would have to miss it, wouldn’t I? The generous outpouring of affirmation, appreciation, intimacy and abundance that I have experienced in the last couple of weeks while I lie in my fragile and weakened state has made me think that, yes, I have gotten to experience what my wake would be like. And yes, thank God, I didn’t have to die to get it. Or at least not yet!
As more and more people are becoming aware of my efforts to manifest my expression, my unique perspective, I am learning that others have secretly been writing or thinking about writing in a similar vein. The difference is that I have just been putting it out there. How odd it is that I have such little sense of privacy. The theme has emerged and re-emerged over the past eight days, with a number of people quizzing me about whether I really want to let it all go to the public so freely. It has caused me to ponder a question that I would not have ever come up with on my own. Should I be more circumspect?
Well, in fact, from my perspective there is no “should” about it. Privacy doesn’t exist, or rather, exists only periodically and in short lived moments in my life.
No day has gone by when someone else didn’t wipe my butt, put food in my mouth, moved my limbs around, dressed and undressed me and otherwise handled my body as part of their own life path in some way – for better or worse. One of the consequences of this is that the “I” of Judith Snow tends to exist somewhat separately from my physical person. The flip side is that I easily enter into other people’s space – actually into their physical aura on occasion. What is privacy?
This has become somewhat of a theme in these writings. Boundaries.
I have rather enjoyed being on a urinary catheter for the past several weeks. This has given me much longer periods of time when I don’t have to interact with another physical person. For example, today after the party, I lay for over an hour in my bed by myself, mostly awake and shifting between watching the goings on outside my window and being with my thoughts. This provides for a certain kind of gathering – me giving myself a sense of continuity. It is a fiction of course, but a very interesting and useful fiction nonetheless. What is it that I am gathering? I suppose you could say that I am piecing together a new story of who I am and who I will be – a story that conforms both to the vast outreach that my life as achieved so far and at the same time the miniscule capacity that I currently have as a body.
In the past I have not reconciled these two bookends of my experience very well, though I am sure many will argue with this statement! I have either overtaxed my body self or I have (more commonly) forgotten how far my dreams and my expressions have reached in favour of thinking of myself as an unaccomplished person.
It would be awesome in Cycle 3 to willingly reach out as far as possible to bring peace and inclusion into the world and at the same time live as the physical being that I truly am – a small and ethereal albeit chubby body. Mother Theresa kind of pulled it off. She was a shrimp!
It puts me in mind of dreaming of just how to enjoy and take care of my body. In the past I have spent quite a bit of time thinking about how to keep myself participating, but not that much about how to keep myself comfortable and happy. This is a space I would like to explore more as I am laying around and recovering both from my illness and from the tests that I will shortly go through.
The third dose of Morphine was to give me the capacity to finish my dinner and do my writing in bed, this late evening. Writing and Morphine don’t go so well together in my little body. I have heard that it enhances the artistic experience in others. I have not found that intoxication of any sort assists me in that way!
Today’s party and the last few days of Facebook acknowledgements have more than amply conveyed to me others’ appreciation of my existence and my contributions. I am affirmed, a little overwhelmed and a touch frustrated. I have reached the point where several plans are emerging. It is clear that my continued contribution is desired. At this point, my body is far, far, far from being up for it.
There is a somewhat macabre thought running through the last few days. Tomorrow is Halloween so perhaps this is all appropriate. I have thought in the past that I would love to have a great funeral but – Dammit! – I would have to miss it, wouldn’t I? The generous outpouring of affirmation, appreciation, intimacy and abundance that I have experienced in the last couple of weeks while I lie in my fragile and weakened state has made me think that, yes, I have gotten to experience what my wake would be like. And yes, thank God, I didn’t have to die to get it. Or at least not yet!
As more and more people are becoming aware of my efforts to manifest my expression, my unique perspective, I am learning that others have secretly been writing or thinking about writing in a similar vein. The difference is that I have just been putting it out there. How odd it is that I have such little sense of privacy. The theme has emerged and re-emerged over the past eight days, with a number of people quizzing me about whether I really want to let it all go to the public so freely. It has caused me to ponder a question that I would not have ever come up with on my own. Should I be more circumspect?
Well, in fact, from my perspective there is no “should” about it. Privacy doesn’t exist, or rather, exists only periodically and in short lived moments in my life.
No day has gone by when someone else didn’t wipe my butt, put food in my mouth, moved my limbs around, dressed and undressed me and otherwise handled my body as part of their own life path in some way – for better or worse. One of the consequences of this is that the “I” of Judith Snow tends to exist somewhat separately from my physical person. The flip side is that I easily enter into other people’s space – actually into their physical aura on occasion. What is privacy?
This has become somewhat of a theme in these writings. Boundaries.
I have rather enjoyed being on a urinary catheter for the past several weeks. This has given me much longer periods of time when I don’t have to interact with another physical person. For example, today after the party, I lay for over an hour in my bed by myself, mostly awake and shifting between watching the goings on outside my window and being with my thoughts. This provides for a certain kind of gathering – me giving myself a sense of continuity. It is a fiction of course, but a very interesting and useful fiction nonetheless. What is it that I am gathering? I suppose you could say that I am piecing together a new story of who I am and who I will be – a story that conforms both to the vast outreach that my life as achieved so far and at the same time the miniscule capacity that I currently have as a body.
In the past I have not reconciled these two bookends of my experience very well, though I am sure many will argue with this statement! I have either overtaxed my body self or I have (more commonly) forgotten how far my dreams and my expressions have reached in favour of thinking of myself as an unaccomplished person.
It would be awesome in Cycle 3 to willingly reach out as far as possible to bring peace and inclusion into the world and at the same time live as the physical being that I truly am – a small and ethereal albeit chubby body. Mother Theresa kind of pulled it off. She was a shrimp!
It puts me in mind of dreaming of just how to enjoy and take care of my body. In the past I have spent quite a bit of time thinking about how to keep myself participating, but not that much about how to keep myself comfortable and happy. This is a space I would like to explore more as I am laying around and recovering both from my illness and from the tests that I will shortly go through.
Saturday, October 30, 2010
3 Boats
On October 26, while laying in my bed, I painted this picture with Mike Skubic as my tracker. Felicia Galati and her mother and supporters were here painting as well. It was a moment of full expression with my community, especially a non-speaking person, Felicia, with me, surrounding me, fully presencing inclusion.
October 29 2010
My birthday, cycle 3, 1
Well I made it – I am thoroughly launched.
My friend, Jay, left early this afternoon after we shared a wonderful birthday breakfast made by Rose, Dom and Felicia – Helen here too, fetching, carrying, feeding and cleaning. This, as well as another amazing massage, started my day with perfection. The leaving time is difficult, as Jay is returning to Phoenix and his family, and who knows when I will see him again.
It is joyful to have Felicia here. She is one of those people I wrote about yesterday, who has the freedom to be fully self expressed without the necessity to engage in boundary setting, negotiations, planning and economic activity. Paradoxically it seems that Felicia is about to become the coordinator of Laser Eagles. The current one just quit. Everyone on the board thinks it’s wonderful idea. Felicia has her own money and her own staff and loves painting and is a regular attendee of the programme, and so she brings with her everything that is required to make it work, especially the understanding of how important this is to the artists. It is as if I have been given a new partner in one of my favourite expressions in life.
Jay and I had many conversations over the 2 days. It’s so funny how – well at least I’ll speak for myself – I approach the difficult conversations indirectly and it takes so long to get to the truth. But the 48 hours was good enough.
I have come to see something that makes a huge shift in how I see myself both as an actor in life and as a generator of intimate relationship. Jay pointed out how many people depend on me, not in the sense of abuse or manipulation but in the sense of anchoring a stable set of commitments and resources. I realise that there are many possible layers of intimacy and of contribution. Most of the people in my life, and perhaps myself, have settled for and even stolen the first layer, imagining that that is all that is available. They have (I have?) settled for taking the superficial and going no further.
A new approach that is open to me is to give freely the first level and also to make it clear to people that much much more is available. However to access these other levels real agreements and commitments must be made because one cannot pour out endlessly without the existence of mirrors that help one guide oneself, learn and see clearly into the depths of a not yet created future.
Practically speaking it looks like entering inclusion projects, like the video game project we are creating with WPIT, by saying to academics and organizational people, “You have seen the tip of the iceberg of what is possible and you are welcome to take it freely and shape it back into your own ideas if you wish. However if you want to truly take this potentially powerful tool and have it grow as an inclusive opportunity to shift the culture, you must enter into contracts with me that allow me to be sustained and to continuously work at keeping it inclusive.” In terms of my own personal relationships it’s a matter of saying: I loved something in you, and you loved something in me, and this is good and freely given. But much much more is available in my heart. If you want to build this we both must have the courage to commit to something greater than the superficial.
Somehow this is a very big shift for me, perhaps because I love so easily, but also because I want so much for people to see what inclusion can bring. I was unaware until yesterday how much I have participated in keeping people at the superficial level of engagement and in so doing have created my own loneliness and frustration. It is good to see it now as I don’t think cycle 3 could continue without a more respectful and firm foundation.
This is a powerful birthday present to myself. At this moment it brings a certain sense of fear, but that is only because I’m just beginning again – the anticipation fear of a new road just taken. It passes. It is not a problem.
Well I made it – I am thoroughly launched.
My friend, Jay, left early this afternoon after we shared a wonderful birthday breakfast made by Rose, Dom and Felicia – Helen here too, fetching, carrying, feeding and cleaning. This, as well as another amazing massage, started my day with perfection. The leaving time is difficult, as Jay is returning to Phoenix and his family, and who knows when I will see him again.
It is joyful to have Felicia here. She is one of those people I wrote about yesterday, who has the freedom to be fully self expressed without the necessity to engage in boundary setting, negotiations, planning and economic activity. Paradoxically it seems that Felicia is about to become the coordinator of Laser Eagles. The current one just quit. Everyone on the board thinks it’s wonderful idea. Felicia has her own money and her own staff and loves painting and is a regular attendee of the programme, and so she brings with her everything that is required to make it work, especially the understanding of how important this is to the artists. It is as if I have been given a new partner in one of my favourite expressions in life.
Jay and I had many conversations over the 2 days. It’s so funny how – well at least I’ll speak for myself – I approach the difficult conversations indirectly and it takes so long to get to the truth. But the 48 hours was good enough.
I have come to see something that makes a huge shift in how I see myself both as an actor in life and as a generator of intimate relationship. Jay pointed out how many people depend on me, not in the sense of abuse or manipulation but in the sense of anchoring a stable set of commitments and resources. I realise that there are many possible layers of intimacy and of contribution. Most of the people in my life, and perhaps myself, have settled for and even stolen the first layer, imagining that that is all that is available. They have (I have?) settled for taking the superficial and going no further.
A new approach that is open to me is to give freely the first level and also to make it clear to people that much much more is available. However to access these other levels real agreements and commitments must be made because one cannot pour out endlessly without the existence of mirrors that help one guide oneself, learn and see clearly into the depths of a not yet created future.
Practically speaking it looks like entering inclusion projects, like the video game project we are creating with WPIT, by saying to academics and organizational people, “You have seen the tip of the iceberg of what is possible and you are welcome to take it freely and shape it back into your own ideas if you wish. However if you want to truly take this potentially powerful tool and have it grow as an inclusive opportunity to shift the culture, you must enter into contracts with me that allow me to be sustained and to continuously work at keeping it inclusive.” In terms of my own personal relationships it’s a matter of saying: I loved something in you, and you loved something in me, and this is good and freely given. But much much more is available in my heart. If you want to build this we both must have the courage to commit to something greater than the superficial.
Somehow this is a very big shift for me, perhaps because I love so easily, but also because I want so much for people to see what inclusion can bring. I was unaware until yesterday how much I have participated in keeping people at the superficial level of engagement and in so doing have created my own loneliness and frustration. It is good to see it now as I don’t think cycle 3 could continue without a more respectful and firm foundation.
This is a powerful birthday present to myself. At this moment it brings a certain sense of fear, but that is only because I’m just beginning again – the anticipation fear of a new road just taken. It passes. It is not a problem.
October 28, 2010
Forty-three minutes to go until my 61st birthday.
Today has been flavored with confusion. This does not please me! I want to be blissed out and zoned out as much as have been most of the other days this week. But it seems I am recovering indeed and along with the recovery comes the capacity to get worried about shit.
Jay is going tomorrow, Lorraine is worried about my finances, Dad’s worried about infections and me getting under supported, the inevitable concern arose about whether the sudden stream of academics interested in WPIT video game building will take over and turn it into some non-inclusive, money making project – wrested from my hands again. Worries, concerns filling up my mind space!
Today held much much more than this. Jay and I had an amazing and almost solitary walk by the lake. Besides the ducks and the black squirrels we were virtually alone with the fading but amazing plants, the clouds, the deep gray cold water. Later at the café I was sung “happy birthday” in Arabic, accompanied by a dancing baby and several other wonderful people. It has been a day of exploring the possibility of genuine boundaries and deep spiral connection. I can feel health returning and there was much less pain as I sat up for several hours today.
Just the same this survival has a cost which currently seems painful. I must plan, I must focus, I must make decisions, and deal with consequences. This shift in my journey is somewhat like being allowed to be a baby - like when I was very sick and whatever moments of clarity and thought came through were real gifts to everyone. Now there is a demand! The demand that there be brackets in time frames and that I step into to a linear dichotomous and responsible way of being – to take my place as an adult among my peers.
I want this of course. Of course it is still out of my reach as well. My body is not ready for serious life. However clearly I am headed in that direction. I am actually somewhere in between – not truly ready to be a citizen but no longer granted the excuse to simply be.
Could it be that I am experiencing a moment of envy? Many of my labeled brothers and sisters show no inclination to participate in political/economic life. They contribute plenty without ever feeling the need to be in reciprocal and normative activities. Many people feel sorry for them that they exist in this space of being without responsible doing. Myself I can sense the illusion that I might enjoy long moments of such extraordinary freedom.
But it is an illusion and I am probably more responding at this moment to fatigue and intensity than anything real.
Just the same, ordinary life can become so worried and narrow. It is not a place that I want to be. I do not want to be bored to death by concern, no matter how practical and obvious it may be.
Well I guess it is not such a big deal. I am sure I will look back on today and recognize that I was simply experiencing re-entry.
There is a dream in here somewhere though. It is something about being deeply connected. It is not that I don’t have that – I have it more than most people have experienced. But somewhere there is an even richer dream. I can imagine, or at least barely sense, a world where everyone could experience something like this – some freedom from worry and concern, some capacity to be intensely present. Perhaps there is something beyond – something about the Star Raft that Jay introduced me to today, something where the economics sort themselves out and people just take care of each other.
It would seem that I am preparing to dive again and reach for this lustrous but illusive pearl.
Today has been flavored with confusion. This does not please me! I want to be blissed out and zoned out as much as have been most of the other days this week. But it seems I am recovering indeed and along with the recovery comes the capacity to get worried about shit.
Jay is going tomorrow, Lorraine is worried about my finances, Dad’s worried about infections and me getting under supported, the inevitable concern arose about whether the sudden stream of academics interested in WPIT video game building will take over and turn it into some non-inclusive, money making project – wrested from my hands again. Worries, concerns filling up my mind space!
Today held much much more than this. Jay and I had an amazing and almost solitary walk by the lake. Besides the ducks and the black squirrels we were virtually alone with the fading but amazing plants, the clouds, the deep gray cold water. Later at the café I was sung “happy birthday” in Arabic, accompanied by a dancing baby and several other wonderful people. It has been a day of exploring the possibility of genuine boundaries and deep spiral connection. I can feel health returning and there was much less pain as I sat up for several hours today.
Just the same this survival has a cost which currently seems painful. I must plan, I must focus, I must make decisions, and deal with consequences. This shift in my journey is somewhat like being allowed to be a baby - like when I was very sick and whatever moments of clarity and thought came through were real gifts to everyone. Now there is a demand! The demand that there be brackets in time frames and that I step into to a linear dichotomous and responsible way of being – to take my place as an adult among my peers.
I want this of course. Of course it is still out of my reach as well. My body is not ready for serious life. However clearly I am headed in that direction. I am actually somewhere in between – not truly ready to be a citizen but no longer granted the excuse to simply be.
Could it be that I am experiencing a moment of envy? Many of my labeled brothers and sisters show no inclination to participate in political/economic life. They contribute plenty without ever feeling the need to be in reciprocal and normative activities. Many people feel sorry for them that they exist in this space of being without responsible doing. Myself I can sense the illusion that I might enjoy long moments of such extraordinary freedom.
But it is an illusion and I am probably more responding at this moment to fatigue and intensity than anything real.
Just the same, ordinary life can become so worried and narrow. It is not a place that I want to be. I do not want to be bored to death by concern, no matter how practical and obvious it may be.
Well I guess it is not such a big deal. I am sure I will look back on today and recognize that I was simply experiencing re-entry.
There is a dream in here somewhere though. It is something about being deeply connected. It is not that I don’t have that – I have it more than most people have experienced. But somewhere there is an even richer dream. I can imagine, or at least barely sense, a world where everyone could experience something like this – some freedom from worry and concern, some capacity to be intensely present. Perhaps there is something beyond – something about the Star Raft that Jay introduced me to today, something where the economics sort themselves out and people just take care of each other.
It would seem that I am preparing to dive again and reach for this lustrous but illusive pearl.
October 27, 2010
Jay Klein’s Birthday
Jay came today. Helen and I picked him up at the airport just before 5pm Toronto time.
It was a beautiful bright cool and windy day. In every way today the colours have been bright, warm and inviting. I picked an old tee-shirt that Jay gave me more than 20 years ago and a pink cardigan to wear along with nearly pink corduroy pants. Bright. Helen and I did the laundry for three beds, and I put my brightest sheets back on. The colours of the faded leaves on our drive to and from the airport still hold intense brightness underneath the fadedness – a last sense of summer heat contained to aid survival over the winter and bring about a new batch of leaves in the spring.
I am enjoying the long moments of lying in my bed. I have recovered sufficiently to not be intensely engaged in my own discomforts. My Etobicoke apartment is a rich soundscape, from seagulls to teenage basketball to buses to midnight airplanes to screaming toddlers, to early morning garbage cans, and much, much more. Added to this is a colour scape made up mainly of objects I have held onto after years of many many, moves, especially the honing down time of living in the trailer. There is colour everywhere, some of it quite clashing, but playful and full of memories.
I have come very much to understand and appreciate why my mother in her early years of Alzheimer’s held a great deal of pleasure at simply looking out a window at construction workers fixing a roof or running a crane to build a new building. Each of these views is a bubble in itself – calling forth a stream of memories, a cascade of long forgotten faces, remembrance of fulfillment and regret. Past and present are intricately linked by colour and sound. Perhaps it is the task of the old simply to appreciate richness of experience.
Jay has come for two days, stepping back into an intimate relationship that had seemed to be lost. So much intimacy seems to be rebounding in my life after years of struggle and loss – or so it seemed at the time. We drove along from the airport to the hospital to my apartment reminiscing of other times and places we have met in Toronto. Long walks, breakfasts at dawn, moments of sorrow in a park as we realized would drift apart, fulfilment and non fulfilment both. But he is here now and it is his birthday and we have shared a beer. (No damn laxative tonight – cause I’m not mixing that many chemicals)
How much I have second guessed my future at every moment of my present. At age 30 I could never, never, never have imagined the richness of my 60s. I’m sure this is simply human to live in such constant doubt. But just the same it is truly amazing how I have underestimated my friends, my God and myself when it has been about imagining a possible future.
Perhaps at this early stage of cycle three I can trust that whatever is ahead of me is a million times worth whatever struggle it might take to make myself available.
I am willing.
Happy Birthday Jay.
Jay came today. Helen and I picked him up at the airport just before 5pm Toronto time.
It was a beautiful bright cool and windy day. In every way today the colours have been bright, warm and inviting. I picked an old tee-shirt that Jay gave me more than 20 years ago and a pink cardigan to wear along with nearly pink corduroy pants. Bright. Helen and I did the laundry for three beds, and I put my brightest sheets back on. The colours of the faded leaves on our drive to and from the airport still hold intense brightness underneath the fadedness – a last sense of summer heat contained to aid survival over the winter and bring about a new batch of leaves in the spring.
I am enjoying the long moments of lying in my bed. I have recovered sufficiently to not be intensely engaged in my own discomforts. My Etobicoke apartment is a rich soundscape, from seagulls to teenage basketball to buses to midnight airplanes to screaming toddlers, to early morning garbage cans, and much, much more. Added to this is a colour scape made up mainly of objects I have held onto after years of many many, moves, especially the honing down time of living in the trailer. There is colour everywhere, some of it quite clashing, but playful and full of memories.
I have come very much to understand and appreciate why my mother in her early years of Alzheimer’s held a great deal of pleasure at simply looking out a window at construction workers fixing a roof or running a crane to build a new building. Each of these views is a bubble in itself – calling forth a stream of memories, a cascade of long forgotten faces, remembrance of fulfillment and regret. Past and present are intricately linked by colour and sound. Perhaps it is the task of the old simply to appreciate richness of experience.
Jay has come for two days, stepping back into an intimate relationship that had seemed to be lost. So much intimacy seems to be rebounding in my life after years of struggle and loss – or so it seemed at the time. We drove along from the airport to the hospital to my apartment reminiscing of other times and places we have met in Toronto. Long walks, breakfasts at dawn, moments of sorrow in a park as we realized would drift apart, fulfilment and non fulfilment both. But he is here now and it is his birthday and we have shared a beer. (No damn laxative tonight – cause I’m not mixing that many chemicals)
How much I have second guessed my future at every moment of my present. At age 30 I could never, never, never have imagined the richness of my 60s. I’m sure this is simply human to live in such constant doubt. But just the same it is truly amazing how I have underestimated my friends, my God and myself when it has been about imagining a possible future.
Perhaps at this early stage of cycle three I can trust that whatever is ahead of me is a million times worth whatever struggle it might take to make myself available.
I am willing.
Happy Birthday Jay.
October 26, 2010
I thought somebody might like to know what I think about when I am laying around just thinking. Of course, like everybody else, I do a lot of thinking which isn’t really thinking. I also do the kind of thinking that is way more like spinning your tires in a snow drift; the kind of thinking where you worry about what you are going to say or collect evidence for what a stupid person somebody is or what a dumb thing you just did – all that sort of thing. I do lots of that, not unlike everybody else, and I try when I notice it to not get stuck there.
Right now, when I don’t know what my life can look like in the next few weeks, I could get myself pretty depressed pretty fast doing that kind of pseudo-thinking. But that is not really what I wanted to share today.
I feel very blessed with the quality of mind that I have. Many, many years ago I recognized that the enjoyment and enlightenment that is available to me through my mind, (and I guess potentially to others), is so great that it is more than worth my while to not mess up my mind with drugs, TV, movies and other nonsense producing stimuli. I don’t mean to be egotistical in any sort of way. I just recognize that I have a doorway to a very different sort of experience. I learned this, by the way, as part of my studies at Landmark Education. I am saying that for those who wonder why I have spent so much time and money in that pursuit.
What I realized probably in about 1992 was that I have no direct access to thinking, but that I can set an intention for what I would like to think about and if I hold to my intention eventually the right sort of thoughts start to come through. It is like I am the owner of a faucet that I cannot turn on or off by myself, but that I can design and redesign over and over again so that I have access to the quality water that comes through. Funny, eh!?!
Much of this kind of thinking comes through as me telling myself stories. One of my favourite stories is imagining myself as sitting on a riser in the power and contribution course being interviewed by Helen Gilhooly and explaining how I have unfolded my Impossible Promise – World Peace Through Inclusion.
Ok, lots more Landmark stuff, I know. Power and Contribution is one of the senior courses in the Wisdom Unlimited division of Landmark Education, I took this course in 2005 and it was in this course that I began to take seriously that perhaps I could be a world leader in peace. Don’t get me wrong, I continued to resist the whole idea of it and still do in some ways, and never really took it on until 2007.
Helen Gilhooly is possibly one of the most remarkable human beings on the planet. I love her for her capacity to listen. Over and over I have seen her create the context for transforming someone just simply by listening to them – not coaching, not advising. I myself have benefitted by a number of such interactions with Helen, and I hold her as a model of who I aim to be, yes, even in Cycle 3.
So in this fantasy, the story I tell myself, Helen is interviewing me in front of the new class about how my Impossible Promise is unfolding. I am telling her that although the course was very valuable, at the same time I have not pursued my promise in the ways that the course workbook would seem to recommend. In this interview I have enough time to explain that it has always been important to me to unfold and understand Inclusion in a way that conforms to the actual capacities of people who get labelled severely disabled. So, almost instinctively, I have turned away from opportunities to build complex projects and organizations, and sought instead to find a pathway that relies on creating relationships and draws on the gifts and contributions of the actual people who are involved.
It is not that the course was of no value at all – quite the contrary. The course caused us to deeply look at the resources that others provide, and the importance of relationship, and noticing what has already been done in the world relative to our vision and the value of having goals that can be measured. In particular, it was the measurement aspect of the course that finally opened the door for me to commit to my dream, because I realized that if people even just started to measure the peace making aspects of inclusion then it would have achieved a level of legitimacy in people’s eyes that would take it beyond my lifetime.
So, back to thinking. As I tell myself these stories I get to see where I have actually limited myself or where there might be a new way to express myself or where there might be a resource I might be ignoring. Like painting the same picture over and over again, it never is exactly the same, and each shift teaches me something about what is possible.
I forgot to say how I redirect or reshape the faucet. It is a matter of holding a question. When I ask a question and hold onto that question with intention in a short matter of time the thoughts, stories and answers begin to flow.
In the realm of thinking question and dream are the same.
Right now, when I don’t know what my life can look like in the next few weeks, I could get myself pretty depressed pretty fast doing that kind of pseudo-thinking. But that is not really what I wanted to share today.
I feel very blessed with the quality of mind that I have. Many, many years ago I recognized that the enjoyment and enlightenment that is available to me through my mind, (and I guess potentially to others), is so great that it is more than worth my while to not mess up my mind with drugs, TV, movies and other nonsense producing stimuli. I don’t mean to be egotistical in any sort of way. I just recognize that I have a doorway to a very different sort of experience. I learned this, by the way, as part of my studies at Landmark Education. I am saying that for those who wonder why I have spent so much time and money in that pursuit.
What I realized probably in about 1992 was that I have no direct access to thinking, but that I can set an intention for what I would like to think about and if I hold to my intention eventually the right sort of thoughts start to come through. It is like I am the owner of a faucet that I cannot turn on or off by myself, but that I can design and redesign over and over again so that I have access to the quality water that comes through. Funny, eh!?!
Much of this kind of thinking comes through as me telling myself stories. One of my favourite stories is imagining myself as sitting on a riser in the power and contribution course being interviewed by Helen Gilhooly and explaining how I have unfolded my Impossible Promise – World Peace Through Inclusion.
Ok, lots more Landmark stuff, I know. Power and Contribution is one of the senior courses in the Wisdom Unlimited division of Landmark Education, I took this course in 2005 and it was in this course that I began to take seriously that perhaps I could be a world leader in peace. Don’t get me wrong, I continued to resist the whole idea of it and still do in some ways, and never really took it on until 2007.
Helen Gilhooly is possibly one of the most remarkable human beings on the planet. I love her for her capacity to listen. Over and over I have seen her create the context for transforming someone just simply by listening to them – not coaching, not advising. I myself have benefitted by a number of such interactions with Helen, and I hold her as a model of who I aim to be, yes, even in Cycle 3.
So in this fantasy, the story I tell myself, Helen is interviewing me in front of the new class about how my Impossible Promise is unfolding. I am telling her that although the course was very valuable, at the same time I have not pursued my promise in the ways that the course workbook would seem to recommend. In this interview I have enough time to explain that it has always been important to me to unfold and understand Inclusion in a way that conforms to the actual capacities of people who get labelled severely disabled. So, almost instinctively, I have turned away from opportunities to build complex projects and organizations, and sought instead to find a pathway that relies on creating relationships and draws on the gifts and contributions of the actual people who are involved.
It is not that the course was of no value at all – quite the contrary. The course caused us to deeply look at the resources that others provide, and the importance of relationship, and noticing what has already been done in the world relative to our vision and the value of having goals that can be measured. In particular, it was the measurement aspect of the course that finally opened the door for me to commit to my dream, because I realized that if people even just started to measure the peace making aspects of inclusion then it would have achieved a level of legitimacy in people’s eyes that would take it beyond my lifetime.
So, back to thinking. As I tell myself these stories I get to see where I have actually limited myself or where there might be a new way to express myself or where there might be a resource I might be ignoring. Like painting the same picture over and over again, it never is exactly the same, and each shift teaches me something about what is possible.
I forgot to say how I redirect or reshape the faucet. It is a matter of holding a question. When I ask a question and hold onto that question with intention in a short matter of time the thoughts, stories and answers begin to flow.
In the realm of thinking question and dream are the same.
October 25, 2010
Municipal Election Day
After two days of painful bed-rest I have a wonderful massage. It was as if the young lady were rerouting several of the energy patterns in my body. I reached a new level of relaxation. I also discovered that I was carrying the guilt of agreeing to having my back operated on almost 40 years ago. It was good to see the guilt and let it go, since in truth it adds nothing either to the past or the present.
Later in the day I went to the second of the last sessions of the pain management work-shop. At dinner before hand I did the reading that was assigned last week. It is eye-opening to realize that there are multiple feed-back loops that keep pain in place and in fact can increase its intensity; loops that include stress, nutrition, self-talk, breathing, and more. Like the “seemings” that we learn to collage in the Wisdom Course, the actual event of pain is long gone and the experience of pain is reinforced and sustained by these cycles.
There is no question that I have experienced stress and injury since choosing to create and leave on the World Peace through Inclusion Tour in October of 2008. And here I am now caught up in the multiple feedback loops. For example, constipation is a natural result of stress and this went unnoticed by me and led to interference with my bladder elimination and my eating habits. My swallowing was weakened by muscle reaction to stress and this led to poor eating habits and less energy. All of this is stressful in and of itself. Does it matter that there may have been an initial injury? Even more so, at this moment, is there not a balance to find between continuing to look for causes and loosening the grip of the feedback loops?
I have much to explore with my circle and a great deal to learn about myself and how I build or reduce these loops of pain.
Perhaps it is a good time to give myself a sabbatical. The purpose would be to rest and relax and also to closely examine myself while learning new things about how bodies work and especially my body. Perhaps the entry into Cycle 3 is to create some elementary studies for myself about myself.
There were several people in the workshop in a kind of “reviewer” status. They affirmed that they have learned to recognize a personal rhythm, a rhythm that if they follow allows them to have significant moments when they can be virtually pain-free and active. Several stated that they sometimes consciously choose to go beyond the point where the rhythms say they should rest and stop “doing”. When they do go beyond this point they know they will shortly experience a huge upswing in pain.
What was exiting about what they had to say is that clearly they had discovered a capacity to choose within a realm of experience that I currently find frightening and overwhelming. Choosing is the door to freedom. So today I have experienced that I can again have a life of my own design.
So now the question is there of how do I design around the bubbles of thought and energy and self-expression that effervesce from my being. The limitation of this art is that the flow and rhythm of the design cannot be driven by results. Rather it must be founded in a pattern of honouring my actual capacities. Of course my capacities are expanded by my commitments and my relationships. What is new is that my own body becomes a central factor in the organization of my art in a different way than it ever has been before.
This seems very odd to say in that I have never lived a life without significant attention to the capacities of my body. Yet this is a very different time. In the past I would see what other people can do with their bodies, especially people who do extraordinary things considered miraculous by ordinary folks (Cirque du Soleil). I found ways to fill in the gap between what I can do and what needed to be done – large gaps in need.
This is a different design structure. Of course I am not certain yet. I am sure that I am still interested in results and commitment. But the point of focus for
the creation of the miraculous is no longer outside of my personal self. This is very much new to me.
After two days of painful bed-rest I have a wonderful massage. It was as if the young lady were rerouting several of the energy patterns in my body. I reached a new level of relaxation. I also discovered that I was carrying the guilt of agreeing to having my back operated on almost 40 years ago. It was good to see the guilt and let it go, since in truth it adds nothing either to the past or the present.
Later in the day I went to the second of the last sessions of the pain management work-shop. At dinner before hand I did the reading that was assigned last week. It is eye-opening to realize that there are multiple feed-back loops that keep pain in place and in fact can increase its intensity; loops that include stress, nutrition, self-talk, breathing, and more. Like the “seemings” that we learn to collage in the Wisdom Course, the actual event of pain is long gone and the experience of pain is reinforced and sustained by these cycles.
There is no question that I have experienced stress and injury since choosing to create and leave on the World Peace through Inclusion Tour in October of 2008. And here I am now caught up in the multiple feedback loops. For example, constipation is a natural result of stress and this went unnoticed by me and led to interference with my bladder elimination and my eating habits. My swallowing was weakened by muscle reaction to stress and this led to poor eating habits and less energy. All of this is stressful in and of itself. Does it matter that there may have been an initial injury? Even more so, at this moment, is there not a balance to find between continuing to look for causes and loosening the grip of the feedback loops?
I have much to explore with my circle and a great deal to learn about myself and how I build or reduce these loops of pain.
Perhaps it is a good time to give myself a sabbatical. The purpose would be to rest and relax and also to closely examine myself while learning new things about how bodies work and especially my body. Perhaps the entry into Cycle 3 is to create some elementary studies for myself about myself.
There were several people in the workshop in a kind of “reviewer” status. They affirmed that they have learned to recognize a personal rhythm, a rhythm that if they follow allows them to have significant moments when they can be virtually pain-free and active. Several stated that they sometimes consciously choose to go beyond the point where the rhythms say they should rest and stop “doing”. When they do go beyond this point they know they will shortly experience a huge upswing in pain.
What was exiting about what they had to say is that clearly they had discovered a capacity to choose within a realm of experience that I currently find frightening and overwhelming. Choosing is the door to freedom. So today I have experienced that I can again have a life of my own design.
So now the question is there of how do I design around the bubbles of thought and energy and self-expression that effervesce from my being. The limitation of this art is that the flow and rhythm of the design cannot be driven by results. Rather it must be founded in a pattern of honouring my actual capacities. Of course my capacities are expanded by my commitments and my relationships. What is new is that my own body becomes a central factor in the organization of my art in a different way than it ever has been before.
This seems very odd to say in that I have never lived a life without significant attention to the capacities of my body. Yet this is a very different time. In the past I would see what other people can do with their bodies, especially people who do extraordinary things considered miraculous by ordinary folks (Cirque du Soleil). I found ways to fill in the gap between what I can do and what needed to be done – large gaps in need.
This is a different design structure. Of course I am not certain yet. I am sure that I am still interested in results and commitment. But the point of focus for
the creation of the miraculous is no longer outside of my personal self. This is very much new to me.
October 24, 2010
Helen Tweddle’s Birthday
Today I would characterize as a day of feeling sorry for myself. It is clear to me that I feel like crap, things hurt in ways they have never hurt before, and it seems to be a really fucking good idea just to quit. Of course, I don’t know what that means really, and certainly I’m not committed to suicide or giving up. It just feels like I’m hitting a brick wall over and over again; perhaps not a brick wall, but a spongy unforgiving wall of a future that does not want me to be in it.
Cycle 2 hangs on for dear life. Not only are all of my good friends and assistants firmly attached to the Judith they have known and served for many years, but they keep asking me in beautiful ways to resurrect myself as a familiar Judith. There is absolutely no maliciousness in this and I am not complaining about it. It’s just amazing how insistent and seductive is the demand that somehow everything get back to normal ASAP!
Today a leader in the area of early childhood education, a man who I respect deeply and who in the past was part of my original liberation from the institution, this man called out of the blue. He spoke of how I am needed around the BMX model of inclusion. Of course, he has no idea that I wrote about it yesterday and he was speaking in general terms in order to encourage me, but just the same. It’s like this insistent loudspeaker call to get up, get up, get up, get back on the horse.
Of course, there are other voices. My friend John McKnight, called in appreciation of my writing and at the same time acknowledged that there is death in every day and some day there will be the “death”.
This is of course a conversation I want to have with somebody. However, I am not certain which somebody I want to have it with. With most people I don’t want to have it because it sounds like I am being a sucky baby. I don’t want to have it with my friend who plans death rituals because she always makes me feel like she’s way too eager, like hovering and anticipating that moment when she can take over. Well, with whom do I want to have the conversation then?
Perhaps with myself and of course, through me, everybody. It’s always been that way. When Shafik had a stroke, he was allowed to die because he had always said he did not want to be uncomfortable and unable to participate. (Shafik lived with bone cancer for about 20 years.) I understand him completely now as the pain is relentless. Such a small thing and yet it consumes every moment in management, energy and thought. It is such a stupid little pain too. Almost non-existent and it seems like nobody could ever find it and tell me what it is, but it makes it absolutely impossible to lie or sit still happily for more than 20 minutes at a stretch.
I have formidable energy, WILL, a multitude of good friends and resources, and I live in possibly the richest and healthiest country in the world, and yet I cannot get myself born into Cycle 3, able to sit or lie down and BE with contentment and focus. Perhaps it’s way too early in the game, but I was never patient.
Can I actually imagine keeping myself healthy and my circle managing all the intricacies of my life with me living for years in pain, and being an artist – an artist of any kind – even a two page a day artist? It has been done. Person after person tells me of people who live day by day drugging and bandaging their painful parts going on and on. Do I not have a tapestry of Freida herself who painted and wrote her pain over and over again?
But I cannot simply die. It is too much of a failure. Somehow for me it is an absolute failure. I, who have learned how to manage multiple sensitivities and incapacities, predict and tune so that my body can continue, living cautiously even reminding myself month after month to “carefully” cross the roads that I love to slip down in my fast wheelchair – I have learned how to live and I do not want to die. But neither do I want to winge away in a bed as if I were literally lying on live coals, morphine or not.
Where is the open door, GOD DAMN IT?!!!!
Today I would characterize as a day of feeling sorry for myself. It is clear to me that I feel like crap, things hurt in ways they have never hurt before, and it seems to be a really fucking good idea just to quit. Of course, I don’t know what that means really, and certainly I’m not committed to suicide or giving up. It just feels like I’m hitting a brick wall over and over again; perhaps not a brick wall, but a spongy unforgiving wall of a future that does not want me to be in it.
Cycle 2 hangs on for dear life. Not only are all of my good friends and assistants firmly attached to the Judith they have known and served for many years, but they keep asking me in beautiful ways to resurrect myself as a familiar Judith. There is absolutely no maliciousness in this and I am not complaining about it. It’s just amazing how insistent and seductive is the demand that somehow everything get back to normal ASAP!
Today a leader in the area of early childhood education, a man who I respect deeply and who in the past was part of my original liberation from the institution, this man called out of the blue. He spoke of how I am needed around the BMX model of inclusion. Of course, he has no idea that I wrote about it yesterday and he was speaking in general terms in order to encourage me, but just the same. It’s like this insistent loudspeaker call to get up, get up, get up, get back on the horse.
Of course, there are other voices. My friend John McKnight, called in appreciation of my writing and at the same time acknowledged that there is death in every day and some day there will be the “death”.
This is of course a conversation I want to have with somebody. However, I am not certain which somebody I want to have it with. With most people I don’t want to have it because it sounds like I am being a sucky baby. I don’t want to have it with my friend who plans death rituals because she always makes me feel like she’s way too eager, like hovering and anticipating that moment when she can take over. Well, with whom do I want to have the conversation then?
Perhaps with myself and of course, through me, everybody. It’s always been that way. When Shafik had a stroke, he was allowed to die because he had always said he did not want to be uncomfortable and unable to participate. (Shafik lived with bone cancer for about 20 years.) I understand him completely now as the pain is relentless. Such a small thing and yet it consumes every moment in management, energy and thought. It is such a stupid little pain too. Almost non-existent and it seems like nobody could ever find it and tell me what it is, but it makes it absolutely impossible to lie or sit still happily for more than 20 minutes at a stretch.
I have formidable energy, WILL, a multitude of good friends and resources, and I live in possibly the richest and healthiest country in the world, and yet I cannot get myself born into Cycle 3, able to sit or lie down and BE with contentment and focus. Perhaps it’s way too early in the game, but I was never patient.
Can I actually imagine keeping myself healthy and my circle managing all the intricacies of my life with me living for years in pain, and being an artist – an artist of any kind – even a two page a day artist? It has been done. Person after person tells me of people who live day by day drugging and bandaging their painful parts going on and on. Do I not have a tapestry of Freida herself who painted and wrote her pain over and over again?
But I cannot simply die. It is too much of a failure. Somehow for me it is an absolute failure. I, who have learned how to manage multiple sensitivities and incapacities, predict and tune so that my body can continue, living cautiously even reminding myself month after month to “carefully” cross the roads that I love to slip down in my fast wheelchair – I have learned how to live and I do not want to die. But neither do I want to winge away in a bed as if I were literally lying on live coals, morphine or not.
Where is the open door, GOD DAMN IT?!!!!
October 23, 2010
This is for my dearest friend Lorraine. She has been keeping the medical side of this journey on a path of integrity, along with the efforts of my other dear friend Bill Worrel. I’m sure that any quirkiness of the system will be defeated by these two intrepid individuals.
Lorraine has heard me speak of the BMX Model of Inclusion. Today we realized that the thinking behind it may in fact be of some use to her in her public health career. I promised to send her something in writing.
Searching my documents I realized – yet once again – that I have spoken at length and done power point presentations about BMX Inclusion but I have not written anything substantive about it. It’s amazing how much goes on inside my head!
Here’s an excerpt from a draft research proposal:
The BMX Model of Inclusion I propose that three distinct states of Inclusion co-exist. Neither is better than the other, but often there is an emergent pull to move from one state to another. I am calling these states B, M, and X:
State B (Basic): Groups allow the presence of people with diverse characteristics. State B’s principal quality is that the includers share presence with diversity, but no other changes are anticipated or offered. The includers like their community as is, expect no major shifts, and the included are expected to adapt to the ways and means of the includers and to get along as best they can. Typically the included express gratitude for the opportunity and work hard to not cause difficulties.
State M (Mechanical): Includers recognize that the included are struggling to get along, and are willing to make “accommodations”. The included move beyond simply being grateful for the opportunity to coexist and begin to advocate for support. For example, service providers currently tend to segregate individuals with cognitive challenges and the professionalization of supporters tends to turn citizens into helpers and volunteers instead of friends and colleagues.
State X (Crossover): Both includers and the included recognize that another world is possible, one that benefits from the gifts and contributions available in the cultures, characteristics, and experiences of members of both the including and included groups. The perception fades that there are two sides and a distinct boundary.
Operationalizing the BMX Model:
State B (Basic) A teenager with autism and no speech is kept at the back of a regular classroom, with no attention paid to whether he is building friendships.
State M (Mechanical) All teenagers with “disability” labels are given opportunities to be in a homeroom for 1st period. The school has a resource room for tutoring, an “inclusive” lunchroom, and Special Olympics classes to replace regular gym.
State X (Crossover) Ninth grade students are invited to form a support circle with a teen who loves music, and who also has autism and no speech. Twenty-three students respond. They meet regularly and enthusiastically at different points in their day and week for the next four years. The teen who focuses the circle enjoys participating in the school band, gym and many more classes than anyone originally expected. The other teens express their appreciation at having an alternative to being “Nerds”, “Preps” or simply left out. The school administration notes a dramatic decrease in fights and vandalism.
The BMX stages are not only descriptive of the world of ability. I’ve had the good fortune to be part of inclusion conversations involving leaders from other cultural areas where inclusion is an issue, such as non English speaking women immigrating to Toronto, and for Aboriginal peoples who often are viewing their situation as one of chronically dealing with invaders.
A B example is of a Rastafarian man who, as part of his cultural practice continuously wears a hat in public. He was invited to a wedding of a more or less traditional Christian congregation and was told by the ushers upon entering the church building that he would be required to remove his hat. He stepped outside and prepared to wait until the ceremony was over, but in the meantime the ushers gathered together and decided that they can make an exception in his case. One stepped out and invited the man back in requesting only that he wait at the back, and he did so.
The strength of B is that neither the includers nor the included are required to give up their unique identities. Many individuals and groups are quite content with B stage inclusion.
The strength of M inclusion is that it gathers a momentum and an impulse for equality. That is to say that people come to believe that if this situation is good for one person than it must be good for everybody. Large scale, even world wide, changes take place in order to make something about M available to all who fit the appropriate characteristics.
A non ability related example of M is ESL classes. In North America perhaps in the 50’s or thereabouts, some schools discovered that making an effort to intentionally support immigrating students to learn English could lead many of them to take full advantage of public school education as they graduated and/or went into adult education. In a short period of time ESL was offered automatically, even forced upon, students as newcomers to Canada.
However under M one’s personal identity is obliterated in favour of whatever characteristics set you apart. A good friend of mine who is a retired high school teacher told me a story of a brother and sister who had been placed in ESL classes in her school. This was no problem at all for the brother. He progressed in a typical manner through ESL to regular class to graduate in a non academic stream. However, his sister had a dream of becoming a medical doctor. She immediately recognized that a placement in ESL would not get her to an academic level where she would be taken seriously as a potential medical student. Somehow she got the ear of my friend who worked against her own high school staff the get the student out of ESL, some extra support, and placement into the more intensive academic stream. That young student in now a gynaecologist.
There is no question that the M approach to inclusion is powerful and effective. Its tendency to obliterate identity, however, in some respects defeats its fundamental purpose.
And so people long for the X or the crossover approach or stage of inclusion.
Small communities often exhibit creative approaches to differences that become quite stable, especially if nobody makes a big deal of them. In my youth there was very little interchange between groups of different faiths, and yet people worked out the economic strategies that made life easier for each other. For example, the staffing of the convenience stores in town would look something like this: mixed from Monday to Thursday, Christian on Friday, Muslim on Saturday and Jewish on Sunday. Everybody gets his or her appropriate day off for religious celebration and everybody gets to have the stores open all week long. Part of the characteristic of X is that the management of it is invisible. Whereas M is very policy driven X is driven by self interest and on the spot creativity.
Nobody has the energy or the desire to be X all the time. It doesn’t hurt to have some of the basics of life run by policy, and at the B level most of us want to just get on with our day to day life without making issues of things. So clearly a mix of BMX in any individuals or groups experience can be optimized so that inclusion sheds its benefits for all.
And finally, this is where the tendency towards peace making comes in. In any community or any individual’s life an appropriate mix of B, M and X irradiates any need or incentive for strife. In other words as people learn to engage in value creation around diversity they experience a genuine alternative to fear and defensiveness when faced with differences in others.
Lorraine has heard me speak of the BMX Model of Inclusion. Today we realized that the thinking behind it may in fact be of some use to her in her public health career. I promised to send her something in writing.
Searching my documents I realized – yet once again – that I have spoken at length and done power point presentations about BMX Inclusion but I have not written anything substantive about it. It’s amazing how much goes on inside my head!
Here’s an excerpt from a draft research proposal:
The BMX Model of Inclusion I propose that three distinct states of Inclusion co-exist. Neither is better than the other, but often there is an emergent pull to move from one state to another. I am calling these states B, M, and X:
State B (Basic): Groups allow the presence of people with diverse characteristics. State B’s principal quality is that the includers share presence with diversity, but no other changes are anticipated or offered. The includers like their community as is, expect no major shifts, and the included are expected to adapt to the ways and means of the includers and to get along as best they can. Typically the included express gratitude for the opportunity and work hard to not cause difficulties.
State M (Mechanical): Includers recognize that the included are struggling to get along, and are willing to make “accommodations”. The included move beyond simply being grateful for the opportunity to coexist and begin to advocate for support. For example, service providers currently tend to segregate individuals with cognitive challenges and the professionalization of supporters tends to turn citizens into helpers and volunteers instead of friends and colleagues.
State X (Crossover): Both includers and the included recognize that another world is possible, one that benefits from the gifts and contributions available in the cultures, characteristics, and experiences of members of both the including and included groups. The perception fades that there are two sides and a distinct boundary.
Operationalizing the BMX Model:
State B (Basic) A teenager with autism and no speech is kept at the back of a regular classroom, with no attention paid to whether he is building friendships.
State M (Mechanical) All teenagers with “disability” labels are given opportunities to be in a homeroom for 1st period. The school has a resource room for tutoring, an “inclusive” lunchroom, and Special Olympics classes to replace regular gym.
State X (Crossover) Ninth grade students are invited to form a support circle with a teen who loves music, and who also has autism and no speech. Twenty-three students respond. They meet regularly and enthusiastically at different points in their day and week for the next four years. The teen who focuses the circle enjoys participating in the school band, gym and many more classes than anyone originally expected. The other teens express their appreciation at having an alternative to being “Nerds”, “Preps” or simply left out. The school administration notes a dramatic decrease in fights and vandalism.
The BMX stages are not only descriptive of the world of ability. I’ve had the good fortune to be part of inclusion conversations involving leaders from other cultural areas where inclusion is an issue, such as non English speaking women immigrating to Toronto, and for Aboriginal peoples who often are viewing their situation as one of chronically dealing with invaders.
A B example is of a Rastafarian man who, as part of his cultural practice continuously wears a hat in public. He was invited to a wedding of a more or less traditional Christian congregation and was told by the ushers upon entering the church building that he would be required to remove his hat. He stepped outside and prepared to wait until the ceremony was over, but in the meantime the ushers gathered together and decided that they can make an exception in his case. One stepped out and invited the man back in requesting only that he wait at the back, and he did so.
The strength of B is that neither the includers nor the included are required to give up their unique identities. Many individuals and groups are quite content with B stage inclusion.
The strength of M inclusion is that it gathers a momentum and an impulse for equality. That is to say that people come to believe that if this situation is good for one person than it must be good for everybody. Large scale, even world wide, changes take place in order to make something about M available to all who fit the appropriate characteristics.
A non ability related example of M is ESL classes. In North America perhaps in the 50’s or thereabouts, some schools discovered that making an effort to intentionally support immigrating students to learn English could lead many of them to take full advantage of public school education as they graduated and/or went into adult education. In a short period of time ESL was offered automatically, even forced upon, students as newcomers to Canada.
However under M one’s personal identity is obliterated in favour of whatever characteristics set you apart. A good friend of mine who is a retired high school teacher told me a story of a brother and sister who had been placed in ESL classes in her school. This was no problem at all for the brother. He progressed in a typical manner through ESL to regular class to graduate in a non academic stream. However, his sister had a dream of becoming a medical doctor. She immediately recognized that a placement in ESL would not get her to an academic level where she would be taken seriously as a potential medical student. Somehow she got the ear of my friend who worked against her own high school staff the get the student out of ESL, some extra support, and placement into the more intensive academic stream. That young student in now a gynaecologist.
There is no question that the M approach to inclusion is powerful and effective. Its tendency to obliterate identity, however, in some respects defeats its fundamental purpose.
And so people long for the X or the crossover approach or stage of inclusion.
Small communities often exhibit creative approaches to differences that become quite stable, especially if nobody makes a big deal of them. In my youth there was very little interchange between groups of different faiths, and yet people worked out the economic strategies that made life easier for each other. For example, the staffing of the convenience stores in town would look something like this: mixed from Monday to Thursday, Christian on Friday, Muslim on Saturday and Jewish on Sunday. Everybody gets his or her appropriate day off for religious celebration and everybody gets to have the stores open all week long. Part of the characteristic of X is that the management of it is invisible. Whereas M is very policy driven X is driven by self interest and on the spot creativity.
Nobody has the energy or the desire to be X all the time. It doesn’t hurt to have some of the basics of life run by policy, and at the B level most of us want to just get on with our day to day life without making issues of things. So clearly a mix of BMX in any individuals or groups experience can be optimized so that inclusion sheds its benefits for all.
And finally, this is where the tendency towards peace making comes in. In any community or any individual’s life an appropriate mix of B, M and X irradiates any need or incentive for strife. In other words as people learn to engage in value creation around diversity they experience a genuine alternative to fear and defensiveness when faced with differences in others.
October 22, 2010
It’s nearly 8:00 PM and the day has slipped away in naps, visitors, bouts of “unwell”, negotiations with assistants, etc. It is easy to see that it will be no easy accomplishment to fulfill on my commitment to write 2 pages (more than 1 anyway!) a day. Even now I could go back to sleep, invoice, clean up, reorganize, do WPIT – but not write!
The day’s accomplishments have been many. Both on the call this morning and with Shirley this afternoon I supported people to be clear and powerful (my gift?) and took steps to building the Community Sunday 5 game of 76 Wisdom Graduate guests. I took the next step in getting a medical referral to pain management support. I obtained a missing and necessary hose connection so I can wear a leg bag properly. I learned about different ways people empty their non-functional bladders. I learned where I might find more holistic support with my medical complexities. I got the tire fixed on the car.
As usual, the list of what I didn’t yet do is just about as long.
The question underneath is: “What has this to do with me as an artist?” My Cycle 2 life is jumping back in, and I am welcoming the familiar, and perhaps a certain level of stress and physical nonfunctionality with it! (Headache, delayed bowel movement)
The bubbles of fire are restrained today, the veneer of annoyance in place, sustaining a familiar body/space.
At the same time some compromise to my new Cycle 3 reality – a kind of reluctant nod to a new self expression - is there as well. I am sitting in a bathrobe, the bedroom messy, hair uncombed, teeth unbrushed, yesterday’s underwear on still. Certain e-mails were deleted: I rescued a fallen collage: asked for and got new flowers, let the phone go unanswered more than once.
I have five unsold paintings from the past few months – late July? I don’t particularly like three of them, but my experience is that what I like has little to do with what appeals to others or sells.
Most were done in a rush, particularly the last – “Feverish” – done in about 25 minutes while I was aching with a bladder that wouldn’t empty down my catheter. It strikes me that to be the artist that can be true to the fire bubbles in me I need to give my expression more time. This is not up to me alone, but up to me as I guide and request of the people around me. I need more trackers. Perhaps I need a more insistent schedule that gives me open space by driving out the “to do’s”. Perhaps I need to believe that my body will indeed heal and dance with this new creation – that it doesn’t need constant inspection, management, supervision.
The thought occurs that there are precedents. I have clearly stood up to others, and to Judith, and “recreated” myself in both Cycle 1 and 2. It cannot be that different to have others, and Judith, come to see myself – no longer as the advocate – as artist.
Practical actions suggest themselves. Once again I have been turned down as a writer by the Ontario Arts Council. But there are other grants, retreats, sponsors. I can take the Cycle 2 marketing skills of which I have many and open a bigger space for Cycle 3 Judith.
How about a show? Not because I want to sell but because I want to paint. Let the paintings go where they will. It is enough to make them!
Poetry? I love words. How often have I fallen back on Lamentation as an authentic knock on walls without doors only to find an unlocked window where the light – the transforming light – was creeping in unannounced.
I can. I simply want to not outstep myself at this time and waste an opportunity to create again a miraculous life.
The day’s accomplishments have been many. Both on the call this morning and with Shirley this afternoon I supported people to be clear and powerful (my gift?) and took steps to building the Community Sunday 5 game of 76 Wisdom Graduate guests. I took the next step in getting a medical referral to pain management support. I obtained a missing and necessary hose connection so I can wear a leg bag properly. I learned about different ways people empty their non-functional bladders. I learned where I might find more holistic support with my medical complexities. I got the tire fixed on the car.
As usual, the list of what I didn’t yet do is just about as long.
The question underneath is: “What has this to do with me as an artist?” My Cycle 2 life is jumping back in, and I am welcoming the familiar, and perhaps a certain level of stress and physical nonfunctionality with it! (Headache, delayed bowel movement)
The bubbles of fire are restrained today, the veneer of annoyance in place, sustaining a familiar body/space.
At the same time some compromise to my new Cycle 3 reality – a kind of reluctant nod to a new self expression - is there as well. I am sitting in a bathrobe, the bedroom messy, hair uncombed, teeth unbrushed, yesterday’s underwear on still. Certain e-mails were deleted: I rescued a fallen collage: asked for and got new flowers, let the phone go unanswered more than once.
I have five unsold paintings from the past few months – late July? I don’t particularly like three of them, but my experience is that what I like has little to do with what appeals to others or sells.
Most were done in a rush, particularly the last – “Feverish” – done in about 25 minutes while I was aching with a bladder that wouldn’t empty down my catheter. It strikes me that to be the artist that can be true to the fire bubbles in me I need to give my expression more time. This is not up to me alone, but up to me as I guide and request of the people around me. I need more trackers. Perhaps I need a more insistent schedule that gives me open space by driving out the “to do’s”. Perhaps I need to believe that my body will indeed heal and dance with this new creation – that it doesn’t need constant inspection, management, supervision.
The thought occurs that there are precedents. I have clearly stood up to others, and to Judith, and “recreated” myself in both Cycle 1 and 2. It cannot be that different to have others, and Judith, come to see myself – no longer as the advocate – as artist.
Practical actions suggest themselves. Once again I have been turned down as a writer by the Ontario Arts Council. But there are other grants, retreats, sponsors. I can take the Cycle 2 marketing skills of which I have many and open a bigger space for Cycle 3 Judith.
How about a show? Not because I want to sell but because I want to paint. Let the paintings go where they will. It is enough to make them!
Poetry? I love words. How often have I fallen back on Lamentation as an authentic knock on walls without doors only to find an unlocked window where the light – the transforming light – was creeping in unannounced.
I can. I simply want to not outstep myself at this time and waste an opportunity to create again a miraculous life.
October 21, 2010
A consistent experience of the past 3 weeks is having the sense that my being is fire or that there are bubbles of fire effervescencing through my being. Sometimes it’s waves of nausea, sometimes pain, sometimes insight.
One of the anchors of my identity as Judith is a question of when and how I will die as a physical being and who will I be when I’m dead. In the first cycle of my life this was entirely a background context framed in the disability conversation. Simply, no one expected me to be a survivor. I was blind sided by this expectation when I was 29, unexpectedly caught up in a drama of realising that I would pass the age of 30.
The same question had a different flavour in my second cycle. Similarly, though I did not expect to get passed 60 but didn’t realise how strong was the expectation. I can see now that many events in my life from about the year 2000 were shaped by a passion to hone in on the true “purpose” of my life and to fulfill it by age 60. I searched for the gift to give and searched even harder to know that I had given it.
Like a cork speeding out of a well shaken Champagne bottle I overshot my mark of 60. physically brought low in the 61st year of my life I have realised that the Gift is given and has been received. But the fire remains.
Suddenly there is a tentative sense of new and open space. Who and what is this fire?
The question of if and when and how I will die continues to be compelling. But now it seems more like blinders on a horse designed to prevent me from seeing what’s going on around me. Not being able to let go of the question – it is deeply woven into my bones – I wonder if there is a way to relate to it differently so that it can be part of a bigger dance and less of a compulsion.
If dying just happens and doesn’t have to be avoided or predicted or even prepared for, if it can just be a sliding moment both present and elusive at all times, what place would it have in my artistic design in my life? Some of my paintings have a dark spot or two in them. Supposing the question of my death was simply a dark spot in my art, or like a floater inside my eyeball, occasionally drifting in and out of my view?
To be filled with fire is to feel something like a hot air balloon. Although my body is solidly stuck wherever it is placed, yet my being is somehow quite floaty, sometimes bumping up against other beings, sometimes close and sometimes far from my own physical body. Yes, I am sure that this is partly Morphine and partly recovery, but there’s more to it than that. I am a very passionate and unfixed perspective.
I’m beginning to want to put dates into my future – to be at this certain meeting, to go to that particular test, to achieve a pre arranged result by a specified time. These points are like anchors or handholes in a rock climbing wall. Partly they exist to create a sense of safety. I am reluctant to leave the normal social/political parameters of our culture. I don’t want to be tossed away as simply odd and of no particular use. But this fear does not hold much sway with me anymore. These moments, these anchors are more like navigation points, or like setting up the corners of a loom upon which to weave the creation of my life.
When I think of them in that way I’m struck by how uncourageous I’m being. Surely if there ever was a time when I would be allowed to create something completely different, this is my moment.
Beyond that I am struck by the enormous fire within. How can I possibly channel this fire so it moves through and beyond my body and is a creative force in the universe. This I would rather do than settle for dampening it with Morphine and other distractions.
One of the anchors of my identity as Judith is a question of when and how I will die as a physical being and who will I be when I’m dead. In the first cycle of my life this was entirely a background context framed in the disability conversation. Simply, no one expected me to be a survivor. I was blind sided by this expectation when I was 29, unexpectedly caught up in a drama of realising that I would pass the age of 30.
The same question had a different flavour in my second cycle. Similarly, though I did not expect to get passed 60 but didn’t realise how strong was the expectation. I can see now that many events in my life from about the year 2000 were shaped by a passion to hone in on the true “purpose” of my life and to fulfill it by age 60. I searched for the gift to give and searched even harder to know that I had given it.
Like a cork speeding out of a well shaken Champagne bottle I overshot my mark of 60. physically brought low in the 61st year of my life I have realised that the Gift is given and has been received. But the fire remains.
Suddenly there is a tentative sense of new and open space. Who and what is this fire?
The question of if and when and how I will die continues to be compelling. But now it seems more like blinders on a horse designed to prevent me from seeing what’s going on around me. Not being able to let go of the question – it is deeply woven into my bones – I wonder if there is a way to relate to it differently so that it can be part of a bigger dance and less of a compulsion.
If dying just happens and doesn’t have to be avoided or predicted or even prepared for, if it can just be a sliding moment both present and elusive at all times, what place would it have in my artistic design in my life? Some of my paintings have a dark spot or two in them. Supposing the question of my death was simply a dark spot in my art, or like a floater inside my eyeball, occasionally drifting in and out of my view?
To be filled with fire is to feel something like a hot air balloon. Although my body is solidly stuck wherever it is placed, yet my being is somehow quite floaty, sometimes bumping up against other beings, sometimes close and sometimes far from my own physical body. Yes, I am sure that this is partly Morphine and partly recovery, but there’s more to it than that. I am a very passionate and unfixed perspective.
I’m beginning to want to put dates into my future – to be at this certain meeting, to go to that particular test, to achieve a pre arranged result by a specified time. These points are like anchors or handholes in a rock climbing wall. Partly they exist to create a sense of safety. I am reluctant to leave the normal social/political parameters of our culture. I don’t want to be tossed away as simply odd and of no particular use. But this fear does not hold much sway with me anymore. These moments, these anchors are more like navigation points, or like setting up the corners of a loom upon which to weave the creation of my life.
When I think of them in that way I’m struck by how uncourageous I’m being. Surely if there ever was a time when I would be allowed to create something completely different, this is my moment.
Beyond that I am struck by the enormous fire within. How can I possibly channel this fire so it moves through and beyond my body and is a creative force in the universe. This I would rather do than settle for dampening it with Morphine and other distractions.
October 20, 2010
When I first returned from the hospital my body tasted and smelled funny. Besides being assaulted by nearly continuous nausea, a state that I realise I’ve been in for a long time, I was confronted, puzzled by this unfamiliar taste and smell. I still have no sense of the smell of my urine because it is carefully carried from me from moment to moment by plastic tubes. My shit had no smell that I could discover.
It is now a week since I have returned to my bed, my apartment, my neighbourhood. I can smell and taste myself as truly myself, although neither the smell nor taste have reeked so far. This is somewhat of a miracle as I have had only two baths in that time. Gradually my shit became familiar to me, though not always. Remarkably large amounts of pro biotic yoghurt along with deeply offensive medicinal laxatives have moved me along in this area.
When I first returned my moods and impressions were unfamiliar as well. I had hours of teariness, not all of it sad. Bubbles and bubbles and bubbles of teariness, effervessencing through my skin. It was bliss to be with people. One on one, gift to gift, present to each of them, quirky as they all are. Waves and waves of exhaustion and no sense of a plan, a future, although always the question “should I be looking for a future?”
I have not been particularly afraid.
Gradually I begin to recognise the familiar moods, the familiar concerns of Judith. Yesterday and today there has been anger and annoyance – familiar, familiar, familiar. Why doesn’t this one answer a question? Why doesn’t this one do what she said she would? Why can’t I get things done on time? Will I end up having to do something that I cannot do again?
Ahh, but there’s the fear. Do I really want to return to the familiar Judith? Isn’t the very familiarity of myself what led me to do such damage to my body? That familiar phlegm in my throat – is it not too much sugar? That familiar dryness at the back of my tongue – is it not me trying to avoid having to take yet another pee which will exhaust myself and my assistant and take another 20 minutes out of our day? That drive, that anger, that annoyance, are they not a huge distraction from who I say I want to be?
And so I am at this point lost. I want to not be the person who nearly took me over the edge this time. I want to be way more present and way more joyful. I want to be someone I do not recognise. But I’m hanging onto the familiar shore.
Familiar shore can be trusted although it has become bankrupt. It got me to where I am, but was built in a lifetime that no longer exists either personally or socially. The familiar references nothing real, but yet it seems real just the same.
I have been blessed with a profound capacity for courage. Of all that I have been perhaps this is the most vital quality to guide myself with at this time. My courage is a true joy to me because it permits me to play where others will not go, over and over and over again to the dismay and amazement of many. It is a great source of humour as I become aged to perplex other people with my willingness.
Today I will begin to redesign my life. I am 9 days from my 61st birthday which is the 1st birthday of my 3rd cycle of 30 years – 3,1. What I will bring from my past is courage and willingness. The rest I will permit to shift.
Where am I going? So far what has emerged from the 2 weeks of re entry is that I am still committed to world peace through inclusion and still committed to the city team. Beyond and around that I am committed to being an artist. To me this simply means that I will say how it looks to me and paint how it looks to me and otherwise express how it is for me simply so that my perspective is alive and vital in the stream of perspectives, for no particularly greater or lesser reason than that. I am a point of view.
It is now a week since I have returned to my bed, my apartment, my neighbourhood. I can smell and taste myself as truly myself, although neither the smell nor taste have reeked so far. This is somewhat of a miracle as I have had only two baths in that time. Gradually my shit became familiar to me, though not always. Remarkably large amounts of pro biotic yoghurt along with deeply offensive medicinal laxatives have moved me along in this area.
When I first returned my moods and impressions were unfamiliar as well. I had hours of teariness, not all of it sad. Bubbles and bubbles and bubbles of teariness, effervessencing through my skin. It was bliss to be with people. One on one, gift to gift, present to each of them, quirky as they all are. Waves and waves of exhaustion and no sense of a plan, a future, although always the question “should I be looking for a future?”
I have not been particularly afraid.
Gradually I begin to recognise the familiar moods, the familiar concerns of Judith. Yesterday and today there has been anger and annoyance – familiar, familiar, familiar. Why doesn’t this one answer a question? Why doesn’t this one do what she said she would? Why can’t I get things done on time? Will I end up having to do something that I cannot do again?
Ahh, but there’s the fear. Do I really want to return to the familiar Judith? Isn’t the very familiarity of myself what led me to do such damage to my body? That familiar phlegm in my throat – is it not too much sugar? That familiar dryness at the back of my tongue – is it not me trying to avoid having to take yet another pee which will exhaust myself and my assistant and take another 20 minutes out of our day? That drive, that anger, that annoyance, are they not a huge distraction from who I say I want to be?
And so I am at this point lost. I want to not be the person who nearly took me over the edge this time. I want to be way more present and way more joyful. I want to be someone I do not recognise. But I’m hanging onto the familiar shore.
Familiar shore can be trusted although it has become bankrupt. It got me to where I am, but was built in a lifetime that no longer exists either personally or socially. The familiar references nothing real, but yet it seems real just the same.
I have been blessed with a profound capacity for courage. Of all that I have been perhaps this is the most vital quality to guide myself with at this time. My courage is a true joy to me because it permits me to play where others will not go, over and over and over again to the dismay and amazement of many. It is a great source of humour as I become aged to perplex other people with my willingness.
Today I will begin to redesign my life. I am 9 days from my 61st birthday which is the 1st birthday of my 3rd cycle of 30 years – 3,1. What I will bring from my past is courage and willingness. The rest I will permit to shift.
Where am I going? So far what has emerged from the 2 weeks of re entry is that I am still committed to world peace through inclusion and still committed to the city team. Beyond and around that I am committed to being an artist. To me this simply means that I will say how it looks to me and paint how it looks to me and otherwise express how it is for me simply so that my perspective is alive and vital in the stream of perspectives, for no particularly greater or lesser reason than that. I am a point of view.
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