Gloria had a fabulous idea today. She suggests that I take all the entries I have made about the cranes, cubes and the prison which is rising before me and make them into one article and publish it – somewhere like The Globe and Mail.
I will do this, but not tonight.
The doing of this is related in a number of ways. First on my mind is to develop the capacity to be calm, courageous and to celebrate life in the midst of all that is life destroying, horrible and disgusting. My automatic response is to ignore or run away. Truly I want to do neither. I want to be able to continue to look out my window, to be a watcher as my Mother was, and to celebrate the fabulous variety of insignificant events that continue to emerge moment by moment just outside my bedroom window. I want to continue to love living in this odd neighbourhood, so close to the lake, so “underdeveloped”, so human. I want to paint the emergence of life around me. I do not want to stop seeing and I do not want to have to go away. These are ways of the past that I have been able to rise above. This is my personal legacy – to be able to be where I am and be who I am whether or not I am afraid.
From another perspective it is too simplistic and fundamentally not true to say that this prison building is wrong. It is very much not what I would choose, but this is not the same thing as being wrong. There are many dynamics that bring about the global economy that result in Texan prisoners building cubes for Ontario prisoners to assemble and live in. I would prefer that people make different choices, and organize themselves differently in the awesome, largely unconscious, effort to work together around the planet. Just the same, although the results of this effort seem so contrary to life and its affirmation, still it is life and living people that are bringing it about. I do not understand and perhaps understanding is not an adequate response or approach. However, in my not understanding I can still appreciate the awesomeness of what is beyond me and my capacity to understand.
I have spent most of my life in a conscious choice to make a difference that I call Inclusion. I feel that this choice, this calling, is in some kind of coordination with the eternal impulse that brings life to the world – often called God. The rising presence of a massive prison in my backyard – rising night by night as I sleep or don’t sleep in my bed – can it be accidental? And even if it is accidental is it not something to which I can respond? What is before me at this time is to discover the response that I can make that forwards the conversation called Inclusion because that is who I am.
If I write my life with a large brush then it seems that Camphill fell through and my finances fell apart so that I might end up in this bedroom looking out this window at the very time when this prison is being assembled. Of course, I could say the same thing about other elements of my life – for example, that Gabor turned against me so that Mike would come to fill the empty position, or that I would have to turn to ODSP so that I would be in a clear position to choose powerfully how I accept or do not accept the next plan from ACF, or that I would contract a life threatening infection and have five doctors deal with it ineffectively so that I might end up lying and looking out this window for nine weeks. I am sure that many would say that I am far too full of myself to write such a major role into my life script.
On another topic, tomorrow is the day that I set to choose if I am leaving for Savannah, or not, on February 12. It seems that we are about $4000 short of what it would take to pay Mike and another assistant separately from the CILT based fund for my personal assistance. The value of doing it this way, besides keeping the peace among myself, CILT and the Ministry of Health, is that I would recoup a large part of the overspending of this account that has happened in the last seven months.
Unfortunately, no such amount of money is forthcoming for all the usual reasons. It is certainly not for lack of looking for it, although I’m sure there are sources that I have not discovered or touched. For the last six weeks I have kept a chart with happy faces and stars to reinforce my efforts to find money. The chart has helped. I am now more than likely going to earn enough money each month this year to be able to pay back some of the ongoing debt I am in, and to travel to some important engagements like the Conference for Global Transformation in May. Just the same, the money for Savannah is not there today. Of course, it may show up tomorrow. It would be awesome!
What would I do in Savannah? Paint “Dirty Window” and have it ready for the ROM exhibit. (This is the painting of the rising prison.) Catch up on what’s been happening with people who are struggling to be economically included in the most racist place I have ever been. Re-immerse myself in an explicitly Christian environment that somehow moves me deeply. Hang out with pelicans during the month before all the tourists invade. Speak to people about what I have learned and questioned in the two years since I last spent time with them. Enjoy the car ride down and back – a time that always allows me to pull my thoughts together. Eat fabulous southern grits and BBQ and other foods rarely encountered in the cooler north. There is so much more that I can hardly imagine that three or even five weeks wouldn’t pass by in a flash.
But it seems, at least tonight, that I am not meant to go. Seemings can be wrong. I sure hope this one is!
Showing posts with label friends. Show all posts
Showing posts with label friends. Show all posts
Saturday, January 29, 2011
Tuesday, January 25, 2011
January 25, 2011
I apologize to readers. Last night I forgot to blog! Just plain forgot until I was already in bed.
In some ways, since I blogged about the prison cells collected outside my window, I have lived a rather drunk, rather surreal life. Not literally drunk – I have had no alcohol and very little Morphine. Rather I have thrown my hat thoroughly into Cycle 3 and now it is simply unfolding. With this come demands – on my time, listening, focus, energy, stamina, words. There are demands from my assistants, ACF, ODSP, the Marsha Forest Centre, the Wisdom City Team, from my circle, my body, Father, WPIT, e-mail, Laser Eagles, the ROM?, the Book of Judith. I am not complaining – just spinning!
It all stems from taking myself seriously – perhaps way too seriously. I continue to imagine that I can transform the world by transforming how diversity is valued and included. Mike and I saw “The King’s Speech” again tonight, and though I waiver between whether I am more like George or Lionel I know (as in KNOW) I have an essential part in a drama much bigger than myself. Everything speaks to me as a potential means of finding a pathway to peace through Inclusion so I can turn down very little these days. That, and the ongoing search for $$’s, keeps prodding me on.
This morning Mike and I met with ACF and their poverty reduction champions and this afternoon with old and new members of the ACF Board and the Inclusion Circle. In all we met for over six hours. Mike was still raring to go after it all, but I was exhausted. For me the morning was mainly about listening, and listening to mainly whining, grieving and nostalgia for days when organizing seemed clearer. Listening took place on top of my own weary concern with feeling like once again I am being drawn into strategies that don’t work,
In the afternoon I felt the need to speak up about how it seems that ACF has not implemented the Inclusion Task Force recommendations. That and other people’s stuff led to a much livelier energy. However, at the end of the day (literally), it still remains in the hands of others to decide when, who and for what end this process will continue.
Going into the movie I lined up behind a young woman who is familiar to me from the Wisdom Course. Coming out we ran into a woman and her friend/supporter, both of whom were active twenty-five years ago in some committee or other that I was part of, probably the Ontario Advocacy Coalition. I felt that a certain element of safety and familiarity was added back into my day. In particular the woman who has a long term cognitive difference after a brain haemorrhage that she had in 1970 brought back the joyful sense that life is to be celebrated. She is just the sort of person I want to bring to lunch with ACF – Mary Lou, Miriam, Chloe, Greg and Felicia – the people who show me over and over again that it is way more effective in the end to stop trying to fix everything, and to enjoy the food, the company and the movie.
Speaking of lunch, I had the best roast beef sandwich I think I have ever had in my life. I could chew and swallow every bite, and I ate the WHOLE thing.
In some ways, since I blogged about the prison cells collected outside my window, I have lived a rather drunk, rather surreal life. Not literally drunk – I have had no alcohol and very little Morphine. Rather I have thrown my hat thoroughly into Cycle 3 and now it is simply unfolding. With this come demands – on my time, listening, focus, energy, stamina, words. There are demands from my assistants, ACF, ODSP, the Marsha Forest Centre, the Wisdom City Team, from my circle, my body, Father, WPIT, e-mail, Laser Eagles, the ROM?, the Book of Judith. I am not complaining – just spinning!
It all stems from taking myself seriously – perhaps way too seriously. I continue to imagine that I can transform the world by transforming how diversity is valued and included. Mike and I saw “The King’s Speech” again tonight, and though I waiver between whether I am more like George or Lionel I know (as in KNOW) I have an essential part in a drama much bigger than myself. Everything speaks to me as a potential means of finding a pathway to peace through Inclusion so I can turn down very little these days. That, and the ongoing search for $$’s, keeps prodding me on.
This morning Mike and I met with ACF and their poverty reduction champions and this afternoon with old and new members of the ACF Board and the Inclusion Circle. In all we met for over six hours. Mike was still raring to go after it all, but I was exhausted. For me the morning was mainly about listening, and listening to mainly whining, grieving and nostalgia for days when organizing seemed clearer. Listening took place on top of my own weary concern with feeling like once again I am being drawn into strategies that don’t work,
In the afternoon I felt the need to speak up about how it seems that ACF has not implemented the Inclusion Task Force recommendations. That and other people’s stuff led to a much livelier energy. However, at the end of the day (literally), it still remains in the hands of others to decide when, who and for what end this process will continue.
Going into the movie I lined up behind a young woman who is familiar to me from the Wisdom Course. Coming out we ran into a woman and her friend/supporter, both of whom were active twenty-five years ago in some committee or other that I was part of, probably the Ontario Advocacy Coalition. I felt that a certain element of safety and familiarity was added back into my day. In particular the woman who has a long term cognitive difference after a brain haemorrhage that she had in 1970 brought back the joyful sense that life is to be celebrated. She is just the sort of person I want to bring to lunch with ACF – Mary Lou, Miriam, Chloe, Greg and Felicia – the people who show me over and over again that it is way more effective in the end to stop trying to fix everything, and to enjoy the food, the company and the movie.
Speaking of lunch, I had the best roast beef sandwich I think I have ever had in my life. I could chew and swallow every bite, and I ate the WHOLE thing.
Saturday, January 22, 2011
January 22, 2011
I am about to prepare the proposal that I will put before the ED of the Atkinson Charitable Foundation (ACF). I recognize that I have a highly emotional response to her request of me. Clearly I am reactivated (or stuck) at more than one level! So, I thought that I would use this blog – this expression vehicle – as a way of writing her a personal letter. Then I could write her the straightforward proposal. I can also suggest that, if she is interested, she read the blog, although that seems pretty risky at the moment. Of course it couldn’t seem so risky if I didn’t feel that much depends on how my working relationship with her turns out, and what each of us is able to accomplish by working together.
I am sure that this is just the sort of thing that Gloria wants me to face and transform in the context of. She is always saying I can’t give anything away, as in permitting others to run with the ball after I have set a direction. I don’t think this is true but I do recognize that I am not the best judge! So these are the words I would say to the new ED who is curious about me, maybe even hopeful about me, and who holds the key to what my next project will look like, perhaps.
Dearest O,
(It always seems that such letters start with “Dear” or “Dearest”)
I have been struggling with how to frame a project to put before you by Monday morning. Saturday evening is about to arrive and I only have the barest outline in my head. I am frustrated, angry and hopeful. I am trained enough to know that I’m not really responding to you, but to a series of former relationships and opportunities both lost and fulfilled which have shaped my life, my understanding of Inclusion and my current “mission” in life. It seems to me that you are interested and that you hold a key to potential progress. However, both my sense of what is a key and what progress is leave me with a feeling that you have undue power over me at this moment. I am reacting to my own “helpless identity” in the face of your “power”.
In the eyes of the world, you are black and I am crippled. We spoke euphemistically about these realities last Wednesday. I explained to you that my relationship to this point with Atkinson has been as a “window washer” – in other words, my circumstances have lead me to a certain kind of work in the world and consequently people imagine both that this is the kind of work I want to do and also that it is the only thing I’m good for. Accordingly, when people want to include me, support me and/or honour me, they offer me another window to wash. This is exactly what I FEEL like you are doing now.
I have been so tempted to ask you if you would like to make some pancakes.
Specifically, I stopped wanting to be an advocate in approximately 1991. I took it up again in order to support the Individualized Funding Coalition of Ontario. In 2004 we were offered an opportunity to “consult” with the Deputy Minister of the Ministry of Community and Social Services in Ontario. I participated fully! I did so because, even though I figured there was very little chance that the work would lead to real policy change, I felt that there needed to be as good as possible a document that recorded for history the benefits of individually supported community participation for people who are labelled with developmental disability.
It is nearly impossible, as you know I am sure, for people to build full participation with minimal resources, including some that are illegally established. Secondly, this power is further diminished by the intense bureaucratic overlay that comes with these resources. Add to this the intensely inadequate capacity to do good research when all that is available to do the work are volunteers, no control group, no standard definition of anything, and tight deadlines to come up with data and analysis. In spite of this, the IFCO managed to produce two reports that each had “eyeball” significance. In other words, you could see by just looking at the data that there are huge differences in how people who have individualized supports participate in their communities versus people who have agency support.
Shortly after we produced this data, the Finance Ministry of the Province of Ontario shut that Deputy Minister down, had him reassigned, and put in place an ineffective puppet. All evidence that the government might move towards individualized support for people who are labelled with developmental disability disappeared overnight.
The hidden consequence of all this, at least hidden to the Ministry, the bureaucrats and well meaning people such as yourself is that the people themselves who are labelled lose at every step of this process. First of all, they lose relationship with their parents and caregivers as these people exhaust themselves with extra work, and the process of being drawn into defining their loved one as a needy disabled person. Secondly, they lose the opportunities that disappear while their caregivers are busy doing other things rather than going out to the library, the park, a volunteer job somewhere, church, etc. etc. Finally, as the bureaucrats dash the hopes of the advocates and burn them out, they lose the energy and commitment of their parents and caregivers – the main source of support in their lives. How many people end up in a worse situation and in group homes just because their parents became advocates and then burnt out? I have no idea what the number is but I am sure that it is not small.
I was not, I believe, turned into a cynic by this defeat, not just because I was expecting defeat but because I knew that people could not be satisfied unless they had tried, and try we did. My intention was to support the effort as best as I could, not imagine that we were somehow going to buck the bureaucracy and actually make a change. At the same time I very much intended to never pick up the banner of advocacy again!
Lo and behold one should never say never! Here comes a very energetic, intelligent and passionate ED who is more than willing to make pancakes. Who am I to say that she is not correct? History has funny turns and I am not the one to say that this is not the time in history when a new voice and new energy might actually shift the social perception of people who have been labelled developmentally disabled.
You remind me so much of an energetic and passionate woman that I met in 1978 who turned my life, and many people’s lives, around. I hated her for a good six months before I fell in love with her and proceeded to do anything she asked of me because somehow around her things really worked out. For example, although we are far from having genuine Inclusive education in Ontario, the bureaucrats have never been able to kill it either, and that has a lot to do with Marsha Forest, who so inspired and so kicked butt that her influence continues 11 years after her death from breast cancer. I can only hope to have such power as Marsha had.
So, you say, it is time to gather the advocates and to have them start talking to each other and to have them begin to create a common identity and a common approach. Do you know that that is exactly what Marsha inspired in our city in 1980 to support our powerful engagement with the system during 1981, the International Year of the Disabled Person? The impact of that conference reverberates to this day in small but fundamental ways.
I can hear Marsha’s voice saying quit your bitching and get writing. This is an opportunity not to be missed.
Alright then – Let’s get on with it! Where’s that pancake recipe?
I am sure that this is just the sort of thing that Gloria wants me to face and transform in the context of. She is always saying I can’t give anything away, as in permitting others to run with the ball after I have set a direction. I don’t think this is true but I do recognize that I am not the best judge! So these are the words I would say to the new ED who is curious about me, maybe even hopeful about me, and who holds the key to what my next project will look like, perhaps.
Dearest O,
(It always seems that such letters start with “Dear” or “Dearest”)
I have been struggling with how to frame a project to put before you by Monday morning. Saturday evening is about to arrive and I only have the barest outline in my head. I am frustrated, angry and hopeful. I am trained enough to know that I’m not really responding to you, but to a series of former relationships and opportunities both lost and fulfilled which have shaped my life, my understanding of Inclusion and my current “mission” in life. It seems to me that you are interested and that you hold a key to potential progress. However, both my sense of what is a key and what progress is leave me with a feeling that you have undue power over me at this moment. I am reacting to my own “helpless identity” in the face of your “power”.
In the eyes of the world, you are black and I am crippled. We spoke euphemistically about these realities last Wednesday. I explained to you that my relationship to this point with Atkinson has been as a “window washer” – in other words, my circumstances have lead me to a certain kind of work in the world and consequently people imagine both that this is the kind of work I want to do and also that it is the only thing I’m good for. Accordingly, when people want to include me, support me and/or honour me, they offer me another window to wash. This is exactly what I FEEL like you are doing now.
I have been so tempted to ask you if you would like to make some pancakes.
Specifically, I stopped wanting to be an advocate in approximately 1991. I took it up again in order to support the Individualized Funding Coalition of Ontario. In 2004 we were offered an opportunity to “consult” with the Deputy Minister of the Ministry of Community and Social Services in Ontario. I participated fully! I did so because, even though I figured there was very little chance that the work would lead to real policy change, I felt that there needed to be as good as possible a document that recorded for history the benefits of individually supported community participation for people who are labelled with developmental disability.
It is nearly impossible, as you know I am sure, for people to build full participation with minimal resources, including some that are illegally established. Secondly, this power is further diminished by the intense bureaucratic overlay that comes with these resources. Add to this the intensely inadequate capacity to do good research when all that is available to do the work are volunteers, no control group, no standard definition of anything, and tight deadlines to come up with data and analysis. In spite of this, the IFCO managed to produce two reports that each had “eyeball” significance. In other words, you could see by just looking at the data that there are huge differences in how people who have individualized supports participate in their communities versus people who have agency support.
Shortly after we produced this data, the Finance Ministry of the Province of Ontario shut that Deputy Minister down, had him reassigned, and put in place an ineffective puppet. All evidence that the government might move towards individualized support for people who are labelled with developmental disability disappeared overnight.
The hidden consequence of all this, at least hidden to the Ministry, the bureaucrats and well meaning people such as yourself is that the people themselves who are labelled lose at every step of this process. First of all, they lose relationship with their parents and caregivers as these people exhaust themselves with extra work, and the process of being drawn into defining their loved one as a needy disabled person. Secondly, they lose the opportunities that disappear while their caregivers are busy doing other things rather than going out to the library, the park, a volunteer job somewhere, church, etc. etc. Finally, as the bureaucrats dash the hopes of the advocates and burn them out, they lose the energy and commitment of their parents and caregivers – the main source of support in their lives. How many people end up in a worse situation and in group homes just because their parents became advocates and then burnt out? I have no idea what the number is but I am sure that it is not small.
I was not, I believe, turned into a cynic by this defeat, not just because I was expecting defeat but because I knew that people could not be satisfied unless they had tried, and try we did. My intention was to support the effort as best as I could, not imagine that we were somehow going to buck the bureaucracy and actually make a change. At the same time I very much intended to never pick up the banner of advocacy again!
Lo and behold one should never say never! Here comes a very energetic, intelligent and passionate ED who is more than willing to make pancakes. Who am I to say that she is not correct? History has funny turns and I am not the one to say that this is not the time in history when a new voice and new energy might actually shift the social perception of people who have been labelled developmentally disabled.
You remind me so much of an energetic and passionate woman that I met in 1978 who turned my life, and many people’s lives, around. I hated her for a good six months before I fell in love with her and proceeded to do anything she asked of me because somehow around her things really worked out. For example, although we are far from having genuine Inclusive education in Ontario, the bureaucrats have never been able to kill it either, and that has a lot to do with Marsha Forest, who so inspired and so kicked butt that her influence continues 11 years after her death from breast cancer. I can only hope to have such power as Marsha had.
So, you say, it is time to gather the advocates and to have them start talking to each other and to have them begin to create a common identity and a common approach. Do you know that that is exactly what Marsha inspired in our city in 1980 to support our powerful engagement with the system during 1981, the International Year of the Disabled Person? The impact of that conference reverberates to this day in small but fundamental ways.
I can hear Marsha’s voice saying quit your bitching and get writing. This is an opportunity not to be missed.
Alright then – Let’s get on with it! Where’s that pancake recipe?
Sunday, January 9, 2011
January 9, 2011
As I was going to bed last night, Mike assisting, after staying up a little late to blog, I thought that the day had been so fulfilling, so replete with authentic experience, that I could happily die with no regrets. Well, I didn’t die. I awoke to a day of more video taping in my winter coat under camera lights, more Farmville, more apple pie, and beautiful sunshine. The vision out of my lake facing window was just like so many of those Christmas card scenes with brilliant sun shining on neat and even tiny houses with perfectly snow covered roof tops!
I got so tired today that I actually fell asleep momentarily during a pause in the taping. Just the same, finally, Michael, Sarah and I reached an ending to the play that we all are excited about. It is in the camera. The editing can happen. I do not have to travel with the play unless I want to.
At the same time I feel the pressure of how structured I am making my life again. Each of my chosen task areas could use whole days in and of themselves to “do” them with research and thoroughness. WPIT, painting, blogging, the ACF Inclusion Circle, travel and workshops, Wisdom Graduate Liaison, the Robert Cooke Coop, attending to the gifts and needs of my staff, not to mention the Individualized Funding envelope upon which we all depend, Farmville, time with my Dad, time watching pelicans and construction cranes – I can’t keep up with myself, and to just give each of them “a lick and a promise” (there’s my Mother again!) fills my day from 6:30am to 12:30am.
Yet I don’t seriously intend to change a thing. It’s all too rich!
A clone? Would it really give me “more time” or would I just expand to nearly burst two lives – not just one?
So often I feel like I never left off being four years old. I just want to play and eat. I do NOT want to go to bed no matter if I can’t stay awake long enough to get there. I want to get into everything, leave the messes to someone else and find out how everything works. And I never really mean to do harm.
Four is compelling and passionate, creative and fantastical, and NEVER reasonable. Four doesn’t have a style, a culture, a career, a financial plan, an ethic or a long memory. Four is optimistic. Four makes and loses friends easily, forgives easily and is easily forgiven. Four is able to bend a long, long way before breaking.
Four is also right on the edge of losing that openness, of becoming fearful, judgemental and certain, of narrowing the options and playing the game. It is nearly the moment to find out there is no Santa Claus.
Then it’s a long, long stretch until maybe, just maybe the adult becomes willing and able to be responsible for creating a world within which she and everyone she touches can be four again.
I want to be, and sometimes am, that adult. It is good!
I got so tired today that I actually fell asleep momentarily during a pause in the taping. Just the same, finally, Michael, Sarah and I reached an ending to the play that we all are excited about. It is in the camera. The editing can happen. I do not have to travel with the play unless I want to.
At the same time I feel the pressure of how structured I am making my life again. Each of my chosen task areas could use whole days in and of themselves to “do” them with research and thoroughness. WPIT, painting, blogging, the ACF Inclusion Circle, travel and workshops, Wisdom Graduate Liaison, the Robert Cooke Coop, attending to the gifts and needs of my staff, not to mention the Individualized Funding envelope upon which we all depend, Farmville, time with my Dad, time watching pelicans and construction cranes – I can’t keep up with myself, and to just give each of them “a lick and a promise” (there’s my Mother again!) fills my day from 6:30am to 12:30am.
Yet I don’t seriously intend to change a thing. It’s all too rich!
A clone? Would it really give me “more time” or would I just expand to nearly burst two lives – not just one?
So often I feel like I never left off being four years old. I just want to play and eat. I do NOT want to go to bed no matter if I can’t stay awake long enough to get there. I want to get into everything, leave the messes to someone else and find out how everything works. And I never really mean to do harm.
Four is compelling and passionate, creative and fantastical, and NEVER reasonable. Four doesn’t have a style, a culture, a career, a financial plan, an ethic or a long memory. Four is optimistic. Four makes and loses friends easily, forgives easily and is easily forgiven. Four is able to bend a long, long way before breaking.
Four is also right on the edge of losing that openness, of becoming fearful, judgemental and certain, of narrowing the options and playing the game. It is nearly the moment to find out there is no Santa Claus.
Then it’s a long, long stretch until maybe, just maybe the adult becomes willing and able to be responsible for creating a world within which she and everyone she touches can be four again.
I want to be, and sometimes am, that adult. It is good!
Monday, December 27, 2010
December 27, 2010
Writing this blog has started to put one question on the table in a big way: “When is my life not anyone else’s business?”
Landmark Education puts a great stock in the value of “sharing”. Telling stories and making confessions, asking questions and publically exposing opinions and beliefs are the grist of every one of the dozens of transformational courses Landmark offers worldwide. Another phrase used to describe this public dialogue is “being in the inquiry”.
I’m not being sarcastic – I have seen and experienced that sharing really works! For one, people quickly find out that their apparently private experience is essentially exactly the same experience that 98% of the human race is having. This takes the heat out of lots of issues. For another, once said out loud thoughts tend to move on instead of showing up over and over again for hours, days, months. This gives clearer space, potentially for some fresh, powerful thinking.
After my vocal cords were damaged by steroids when I was twelve and I developed a masculine timbre to my speaking I became essentially silent out of embarrassment. This lack of willingness to speak up was reinforced by other strained and/or embarrassing moments in my teenage years.
Working with Marsha Forest brought me into a great many situations where my deep reticence to state my perspective was strained to the max! On many, many occasions I would be told that I had ten minutes to say something in front of a hundred people with no warning or preparation. The trouble was (and is!) that I really had some things I wanted to say, and at some level I was gratified by the opportunity. It was only after I took the Landmark Forum in 1990 that I began to develop a genuine willingness to speak up and out, and some comfort and skill in being a public figure.
The other side of the picture is that I have never had any real privacy. I share my body with many, many people, year after year. I quickly found out, too, that I gained a certain safety in having few secrets. Since everyone knows that everyone else knows my business, and theirs too should they share something with me, there is no room for the kind of manipulation that many people who are supported by others experience. That is to say I am much less vulnerable to abuse of all sorts because there is no room for: “This is OUR secret!”
The flip side of “tell all” is that I have not been good at understanding other people’s boundaries. I have had a “breakthrough” in that area this year. Simply put, I now know that I don’t easily see other’s boundaries and sometimes need to warn people to explicitly tell me where the edges are. I also now know that I may be wanting to be more obviously setting boundaries for myself. There is some strength in having shores for the river.
So then in the context of this blog is there some sort or level of secrecy that I want to maintain – is there some part of my thinking, feeling and experience that I don’t want to lay before known or unknown readers?
I recently created an identity for Facebook so that I can play Farmville in one character and keep the Judith Snow account free of all the nonsense messages. Right away I realized that I could give this new identity some characteristics, definitely some friends and a new public life.
So now one question is: “Do I share this new life with you?”
Landmark Education puts a great stock in the value of “sharing”. Telling stories and making confessions, asking questions and publically exposing opinions and beliefs are the grist of every one of the dozens of transformational courses Landmark offers worldwide. Another phrase used to describe this public dialogue is “being in the inquiry”.
I’m not being sarcastic – I have seen and experienced that sharing really works! For one, people quickly find out that their apparently private experience is essentially exactly the same experience that 98% of the human race is having. This takes the heat out of lots of issues. For another, once said out loud thoughts tend to move on instead of showing up over and over again for hours, days, months. This gives clearer space, potentially for some fresh, powerful thinking.
After my vocal cords were damaged by steroids when I was twelve and I developed a masculine timbre to my speaking I became essentially silent out of embarrassment. This lack of willingness to speak up was reinforced by other strained and/or embarrassing moments in my teenage years.
Working with Marsha Forest brought me into a great many situations where my deep reticence to state my perspective was strained to the max! On many, many occasions I would be told that I had ten minutes to say something in front of a hundred people with no warning or preparation. The trouble was (and is!) that I really had some things I wanted to say, and at some level I was gratified by the opportunity. It was only after I took the Landmark Forum in 1990 that I began to develop a genuine willingness to speak up and out, and some comfort and skill in being a public figure.
The other side of the picture is that I have never had any real privacy. I share my body with many, many people, year after year. I quickly found out, too, that I gained a certain safety in having few secrets. Since everyone knows that everyone else knows my business, and theirs too should they share something with me, there is no room for the kind of manipulation that many people who are supported by others experience. That is to say I am much less vulnerable to abuse of all sorts because there is no room for: “This is OUR secret!”
The flip side of “tell all” is that I have not been good at understanding other people’s boundaries. I have had a “breakthrough” in that area this year. Simply put, I now know that I don’t easily see other’s boundaries and sometimes need to warn people to explicitly tell me where the edges are. I also now know that I may be wanting to be more obviously setting boundaries for myself. There is some strength in having shores for the river.
So then in the context of this blog is there some sort or level of secrecy that I want to maintain – is there some part of my thinking, feeling and experience that I don’t want to lay before known or unknown readers?
I recently created an identity for Facebook so that I can play Farmville in one character and keep the Judith Snow account free of all the nonsense messages. Right away I realized that I could give this new identity some characteristics, definitely some friends and a new public life.
So now one question is: “Do I share this new life with you?”
Sunday, December 26, 2010
December 26, 2010
There are moments when the need for greater integrity asserts itself. I have noticed that culturally it’s something we often think about at year’s end. The need has been calling to me, and those near to me, urgently for some time, but especially since Wednesday or so.
In Landmark Education lingo integrity is about workability, not morality. We speak about “unworkability” coming from missing integrity – some element of a physical structure, a network of communication or a plan that – by not having been put in place, or in being forgotten or ignored – weakens the project or relationship and makes room for ineffectiveness and drama.
For powerful people integrity is nearly always “out” because, paradoxically, success creates change in the world which brings a need for new projects, which need different integrity, and so some element is always going to be not yet in place. Powerful people must be continuously looking for what’s missing. “Missings” will be in the area of context, complete work, honest and open communication, and meeting other’s and your own expectations.
Yesterday I wrote about the missing integrity that was coming up for me around the celebration of Christmas. It came up similarly today in that the friends I was with have had to leave where they were living for the second year in a row at Christmas time. We met to “celebrate” in a back kitchen of a church. They are safe, warm and fed, but without the sort of stability that permits moving forward in meeting goals. The disorientation and anxiety were palpable.
In other areas, money is needed to build up WPIT projects and its organization, and to stabilize my staffing and home. The integrity of living on ODSP is very different from the structures, commitments and communication – not to mention day-to-day action – that will bring in our ideal $6 million to give WPIT and me a solid foundation. While between these “ways of life” I need to live poor and think and act rich – another sort of integrity to create as I move toward having money.
Mike and I were talking about the integrity of being lazy. I find that if I never plan for time off or don’t stick to my plan, subtly the sense that I am a martyr to the cause of Inclusion creeps in and I become tired, scattered and ineffective. However, not just any sort of laziness truly satisfies – leaving me with the willingness to keep my commitments. Mike and I were talking about what sorts of time off and undone activities truly satisfy that “time-off” urge.
Then there are the books. Tonight we began the rough sorting of my writings into two types – autobiography and theory. It’s the beginning of creating the integrity of the two books – integrities that we want to put into place rapidly, and while lots of other things are going on at the same time. What will become available is that at least one book can be sold with the ROM exhibit this summer creating the context for people’s interest in it. This can generate income that I need for me, staffing and WPIT.
It’s not quite like making a New Year’s resolution. And it is also like it. It’s all about reinvention. This blog is part of the expression of this reinvention. The “third cycle” model is also integral to remodelling of Judith Snow and her interesting life.
I learned last week that keeping my resolutions – recreating integrity – demands that I treat my unwillingness like a seven year old who is learning new behaviours and skills. Beating myself up makes no sense and doesn’t work all that well in any case. So I made myself a behaviour modification chart and I will put a happy face sticker on every part of the chart where I keep my promise to myself to fundraise.
Tomorrow I begin again.
In Landmark Education lingo integrity is about workability, not morality. We speak about “unworkability” coming from missing integrity – some element of a physical structure, a network of communication or a plan that – by not having been put in place, or in being forgotten or ignored – weakens the project or relationship and makes room for ineffectiveness and drama.
For powerful people integrity is nearly always “out” because, paradoxically, success creates change in the world which brings a need for new projects, which need different integrity, and so some element is always going to be not yet in place. Powerful people must be continuously looking for what’s missing. “Missings” will be in the area of context, complete work, honest and open communication, and meeting other’s and your own expectations.
Yesterday I wrote about the missing integrity that was coming up for me around the celebration of Christmas. It came up similarly today in that the friends I was with have had to leave where they were living for the second year in a row at Christmas time. We met to “celebrate” in a back kitchen of a church. They are safe, warm and fed, but without the sort of stability that permits moving forward in meeting goals. The disorientation and anxiety were palpable.
In other areas, money is needed to build up WPIT projects and its organization, and to stabilize my staffing and home. The integrity of living on ODSP is very different from the structures, commitments and communication – not to mention day-to-day action – that will bring in our ideal $6 million to give WPIT and me a solid foundation. While between these “ways of life” I need to live poor and think and act rich – another sort of integrity to create as I move toward having money.
Mike and I were talking about the integrity of being lazy. I find that if I never plan for time off or don’t stick to my plan, subtly the sense that I am a martyr to the cause of Inclusion creeps in and I become tired, scattered and ineffective. However, not just any sort of laziness truly satisfies – leaving me with the willingness to keep my commitments. Mike and I were talking about what sorts of time off and undone activities truly satisfy that “time-off” urge.
Then there are the books. Tonight we began the rough sorting of my writings into two types – autobiography and theory. It’s the beginning of creating the integrity of the two books – integrities that we want to put into place rapidly, and while lots of other things are going on at the same time. What will become available is that at least one book can be sold with the ROM exhibit this summer creating the context for people’s interest in it. This can generate income that I need for me, staffing and WPIT.
It’s not quite like making a New Year’s resolution. And it is also like it. It’s all about reinvention. This blog is part of the expression of this reinvention. The “third cycle” model is also integral to remodelling of Judith Snow and her interesting life.
I learned last week that keeping my resolutions – recreating integrity – demands that I treat my unwillingness like a seven year old who is learning new behaviours and skills. Beating myself up makes no sense and doesn’t work all that well in any case. So I made myself a behaviour modification chart and I will put a happy face sticker on every part of the chart where I keep my promise to myself to fundraise.
Tomorrow I begin again.
Saturday, December 25, 2010
December 25, 2010 - Signing On Again
Well, I’m signing on again. It took two days to assemble 475 pages of stuff I have been writing since 1992 or so. Andrew K. printed off the pile; Mike Skubic is doing a quick read through to make a rough division between autobiographic material and theory. Then my real work starts – to pull it together and to write the necessary bridges to get two books ready for a serious edit.
Anyway, even with reinstating Farmville – under an alter ego, Alex Rooke - I have time and I missed writing, so I’m back!
Obviously, today is Christmas Day. Lots of eating! Lots of driving! Lots of Christmas songs and one Chanukah tune on the radio that either I have never heard before or were in “covers” I am unfamiliar with. Lots of stuff I don’t like but mixed in with all a string of moments and events that are whimsical, nostalgic, magical or just plain funny. It adds up to another memorable Christmas.
The good stuff:
- My brother Jim pulled off on short notice a truly family Christmas brunch, with Dad, Rosemary and Armand present, and Ian and Maude (still a little hung over from Ian’s 65th birthday celebration two nights ago!) Skyping in from Yuma, Arizona.
- A kiss and a beautiful red candle from Cristos.
- Being at Camphill Nottawasaga for Christmas dinner – a true feast.
- The setting sunlight on the forest trees.
- Getting the coffee stains out of my bra and shirt AND having a second red shirt to change into between feasts!
- Getting a new recipe for cranberry sauce.
- Having ten people LOVE the apple pie I brought.
I began to think that maybe next year I could pull off a Christmas that I would fully feel was “right” for me. Of course, as soon as the thought crossed my mind I began to back away from it. The mere effort to “make” something “right” can cause me so much stress that it can never be right. Just the same, besides the plain reality that Mom is no longer with us to set the pace and declare what the standards are, there are other missing factors that perhaps I could take on having in place.
I realize that I have not put my oar into the water Christmas-wise for some time. Last year I was too freaked out from Camphill having ejected me and the unanticipated return to Toronto. The year before that I was in Tybee. For four or five years before that I put all my energies into being on the Landmark Education Wisdom Year End Cruise. I am definitely out of the habit of designing my own piece of this December celebration.
Yet, it clearly is important to me. The day is no longer a religious essential within my spiritual framework, but it holds a sense of mystery just the same – the songs that say we can end war if we want to, the concept of the most vulnerable turning the world on its ear, the call to generousity, hospitality and abundance speak to me deeply.
So what would I put into my Christmas.
- a real tree, one that gives its life, and has scent and requires tending and cleaning up afterward
- a gathering to decorate the tree, and elegant ornaments to do it with
- an accessible celebration and feast on Christmas Day, where I am with parts of my family that never think of inviting me, and where I don’t worry all day about where and when I will get to the bathroom
- a personal assistant for the day that I want to spend the day with
- a feast that is generous, sumptuous and diabetic friendly
- some old fashioned, well performed, Christmas music
- some fun stuff like a Secret Santa present exchange
- a guest or two who would welcome an opportunity for a “real” Christmas
I guess I better get cracking making my Christmas 2011 happen!
Anyway, even with reinstating Farmville – under an alter ego, Alex Rooke - I have time and I missed writing, so I’m back!
Obviously, today is Christmas Day. Lots of eating! Lots of driving! Lots of Christmas songs and one Chanukah tune on the radio that either I have never heard before or were in “covers” I am unfamiliar with. Lots of stuff I don’t like but mixed in with all a string of moments and events that are whimsical, nostalgic, magical or just plain funny. It adds up to another memorable Christmas.
The good stuff:
- My brother Jim pulled off on short notice a truly family Christmas brunch, with Dad, Rosemary and Armand present, and Ian and Maude (still a little hung over from Ian’s 65th birthday celebration two nights ago!) Skyping in from Yuma, Arizona.
- A kiss and a beautiful red candle from Cristos.
- Being at Camphill Nottawasaga for Christmas dinner – a true feast.
- The setting sunlight on the forest trees.
- Getting the coffee stains out of my bra and shirt AND having a second red shirt to change into between feasts!
- Getting a new recipe for cranberry sauce.
- Having ten people LOVE the apple pie I brought.
I began to think that maybe next year I could pull off a Christmas that I would fully feel was “right” for me. Of course, as soon as the thought crossed my mind I began to back away from it. The mere effort to “make” something “right” can cause me so much stress that it can never be right. Just the same, besides the plain reality that Mom is no longer with us to set the pace and declare what the standards are, there are other missing factors that perhaps I could take on having in place.
I realize that I have not put my oar into the water Christmas-wise for some time. Last year I was too freaked out from Camphill having ejected me and the unanticipated return to Toronto. The year before that I was in Tybee. For four or five years before that I put all my energies into being on the Landmark Education Wisdom Year End Cruise. I am definitely out of the habit of designing my own piece of this December celebration.
Yet, it clearly is important to me. The day is no longer a religious essential within my spiritual framework, but it holds a sense of mystery just the same – the songs that say we can end war if we want to, the concept of the most vulnerable turning the world on its ear, the call to generousity, hospitality and abundance speak to me deeply.
So what would I put into my Christmas.
- a real tree, one that gives its life, and has scent and requires tending and cleaning up afterward
- a gathering to decorate the tree, and elegant ornaments to do it with
- an accessible celebration and feast on Christmas Day, where I am with parts of my family that never think of inviting me, and where I don’t worry all day about where and when I will get to the bathroom
- a personal assistant for the day that I want to spend the day with
- a feast that is generous, sumptuous and diabetic friendly
- some old fashioned, well performed, Christmas music
- some fun stuff like a Secret Santa present exchange
- a guest or two who would welcome an opportunity for a “real” Christmas
I guess I better get cracking making my Christmas 2011 happen!
Monday, December 20, 2010
December 20, 2010
Jen the masseuse, Kevin the frazzling child, trading a ride to Christmas shop with Helen for a car wash – inside and out, fundraising, cancelled meetings all day, tracking down a minced pie for tomorrow’s Laser Eagles potluck, discussing the next phases of WPIT with Mike, answered and unanswered e-mail, wrapping presents – these occupied my day.
Jen says there is no choice except to rest. At the same time we are on a very different plane today with my body, discussing together the intricacies of clearing and opening space for my right side while moving more of what I do with my right side into my left side – practical to spiritual. It’s a much different place than managing pain, though there is still some pain to manage. Oh, by the way, I don’t really get what all that means in a day-to-day way. Stay tuned!
When I get to this moment in the year I generally feel a certain sense of victory. This year, this night, at 3:17am Eastern Time there will be a full eclipse of the moon and we will also pass the Solstice. Thursday will yield more sunlight than today. Daylight will steadily lengthen until June 21, 2011.
There are moments in life when you know for certain that it doesn’t get worse than this. Those moments are perversely joyful, at least to me, giving a sense of power and vitality. Now that I am solidly into my Third Cycle this eclipsed Solstice offers just such a sense of joy and strength. I have already come through some of the most difficult moments of my life, and yet so much potential and realized opportunity is with me at this time.
I love my home, my health has returned, I have pathways to money, I have great staff and awesome friends, the ROM is working with me, the Book of Judith will tour this year coming and next, Mike Skubic is putting real legs under WPIT and – mysteriously – I even feel more attractive to men. I want to be a leader, I am a leader and I have the strongest chance ever to make a worldwide difference.
Some euphoria is Morphine, no doubt. Yesterday I took none but today I took two doses. Just the same could Morphine give me a high if there was nothing in my soul to be uplifted? I doubt it.
Besides money, if there is something to be at work to accomplish it would be to paint more frequently and steadily, which means having reliable and frequent access to a tracker that is trained to my ways. Mike has great potential but we have so much else going on that tracking for me easily gets sidelined. There is no reason I couldn’t have more than one tracker.
I never expected that art and writing would play such a large part of my life and be such a strong path to building Inclusion. Yet when I look back over the past seven years, and also twenty-eight years, painting, theatre and writing have been the most expressive and reliable vehicles for me to be Judith.
Funny how long it takes to see the obvious.
Anyway it is time to focus on painting, writing, friends, good food and rest. There are other important aspects to my life, of course, but these are my foundation.
The Third Cycle will continue.
Jen says there is no choice except to rest. At the same time we are on a very different plane today with my body, discussing together the intricacies of clearing and opening space for my right side while moving more of what I do with my right side into my left side – practical to spiritual. It’s a much different place than managing pain, though there is still some pain to manage. Oh, by the way, I don’t really get what all that means in a day-to-day way. Stay tuned!
When I get to this moment in the year I generally feel a certain sense of victory. This year, this night, at 3:17am Eastern Time there will be a full eclipse of the moon and we will also pass the Solstice. Thursday will yield more sunlight than today. Daylight will steadily lengthen until June 21, 2011.
There are moments in life when you know for certain that it doesn’t get worse than this. Those moments are perversely joyful, at least to me, giving a sense of power and vitality. Now that I am solidly into my Third Cycle this eclipsed Solstice offers just such a sense of joy and strength. I have already come through some of the most difficult moments of my life, and yet so much potential and realized opportunity is with me at this time.
I love my home, my health has returned, I have pathways to money, I have great staff and awesome friends, the ROM is working with me, the Book of Judith will tour this year coming and next, Mike Skubic is putting real legs under WPIT and – mysteriously – I even feel more attractive to men. I want to be a leader, I am a leader and I have the strongest chance ever to make a worldwide difference.
Some euphoria is Morphine, no doubt. Yesterday I took none but today I took two doses. Just the same could Morphine give me a high if there was nothing in my soul to be uplifted? I doubt it.
Besides money, if there is something to be at work to accomplish it would be to paint more frequently and steadily, which means having reliable and frequent access to a tracker that is trained to my ways. Mike has great potential but we have so much else going on that tracking for me easily gets sidelined. There is no reason I couldn’t have more than one tracker.
I never expected that art and writing would play such a large part of my life and be such a strong path to building Inclusion. Yet when I look back over the past seven years, and also twenty-eight years, painting, theatre and writing have been the most expressive and reliable vehicles for me to be Judith.
Funny how long it takes to see the obvious.
Anyway it is time to focus on painting, writing, friends, good food and rest. There are other important aspects to my life, of course, but these are my foundation.
The Third Cycle will continue.
Saturday, December 18, 2010
December 18, 2010
I made $0 today. Dad paid the $26 to fix the tire. Tomorrow I will make nothing and on Monday I will make $500.
I rested today, levelled up twice in Farmville, did some Wisdom preparation for our course completion night, some ROM related stuff, and visited with Steve for a couple of hours. Then I went Christmas shopping with my hyper eleven year old friend, Kevin, from down the hall. His mother, Sherry, practically worshipped me when I picked him up. I can only imagine that he is a handful – the kind of child that REALLY needs a whole village to raise him.
Yet having him around as he has been for the last eight days feels good mostly. Boundaries are needed – yes. I amused and shocked myself when I first saw that he had taken a half a pie out of its box and put it on his personal plate! There was no measured thought in my parent-like response to that one! But both the wanting to and being able to effectively intervene were right there, and it felt good! Yes, he can be safe with me.
Otherwise we rode in the car, shopped at a used everything store for Christmas stuff and ate together. I learned that the current word for “very good” is “Bam”. It feels good to know that too.
I realize that I present questions, suggestions, alternatives and explanations to Kevin that often make no sense to him or of no interest. Tonight I decided that this is not a problem. I recalled how Dad talked endlessly at a level usually just out of reach, and continuously presented reading material and other information that had nothing to do with my reality. But he kept in touch somehow with my world as I think I am with Kevin’s. I think this because Kevin keeps on coming back for more.
When I was ready and willing to be available I had Dad’s world already with me. So I felt OK today with explaining to a fidgety eleven year old how one gets a driver’s license while he wasn’t listening or comprehending much, yet was also hanging in for the whole experience.
A poor kid with labels based on his perception differences with a great Mom in a bunch of fractured relationships – half a hallway away. It has taken fifteen months and two parties to find them, or rather, for them to be willing to come close. I held those parties with Peter’s assistance because of genuinely believing in WPIT, Giftedness and John McKnight style community development.
I feel like I am on a number of thresholds and that something is breaking my way. Can it be that once again the universe is willing for me to have my dreams come true? Actually I imagine that the Universe has always been willing. It’s just that it is never just about me and so whole worlds must shift for things to line up. They are shifting.
Perhaps the Universe is with me as my Dad was with me when I was ten, or as I am with Kevin now. It is presenting me with the dream, the world and the pathways. However I can only dimly catch the drift right now. Just the same I am getting that there is a drift to catch and I am willing. Is it possible that I am now also close to being able?
I rested today, levelled up twice in Farmville, did some Wisdom preparation for our course completion night, some ROM related stuff, and visited with Steve for a couple of hours. Then I went Christmas shopping with my hyper eleven year old friend, Kevin, from down the hall. His mother, Sherry, practically worshipped me when I picked him up. I can only imagine that he is a handful – the kind of child that REALLY needs a whole village to raise him.
Yet having him around as he has been for the last eight days feels good mostly. Boundaries are needed – yes. I amused and shocked myself when I first saw that he had taken a half a pie out of its box and put it on his personal plate! There was no measured thought in my parent-like response to that one! But both the wanting to and being able to effectively intervene were right there, and it felt good! Yes, he can be safe with me.
Otherwise we rode in the car, shopped at a used everything store for Christmas stuff and ate together. I learned that the current word for “very good” is “Bam”. It feels good to know that too.
I realize that I present questions, suggestions, alternatives and explanations to Kevin that often make no sense to him or of no interest. Tonight I decided that this is not a problem. I recalled how Dad talked endlessly at a level usually just out of reach, and continuously presented reading material and other information that had nothing to do with my reality. But he kept in touch somehow with my world as I think I am with Kevin’s. I think this because Kevin keeps on coming back for more.
When I was ready and willing to be available I had Dad’s world already with me. So I felt OK today with explaining to a fidgety eleven year old how one gets a driver’s license while he wasn’t listening or comprehending much, yet was also hanging in for the whole experience.
A poor kid with labels based on his perception differences with a great Mom in a bunch of fractured relationships – half a hallway away. It has taken fifteen months and two parties to find them, or rather, for them to be willing to come close. I held those parties with Peter’s assistance because of genuinely believing in WPIT, Giftedness and John McKnight style community development.
I feel like I am on a number of thresholds and that something is breaking my way. Can it be that once again the universe is willing for me to have my dreams come true? Actually I imagine that the Universe has always been willing. It’s just that it is never just about me and so whole worlds must shift for things to line up. They are shifting.
Perhaps the Universe is with me as my Dad was with me when I was ten, or as I am with Kevin now. It is presenting me with the dream, the world and the pathways. However I can only dimly catch the drift right now. Just the same I am getting that there is a drift to catch and I am willing. Is it possible that I am now also close to being able?
Wednesday, December 15, 2010
December 15, 2010
I don’t want to do this. I don’t want to do this. I don’t want to do this. I don’t want to do this. I don’t want to do this.
Childish, isn’t it?!?
It’s been one of those days. The good part was that I went to the pain clinic again and got to try a TENS machine. I was quite doubtful, but the 20 minutes I did spend on it were quite comfortable. I can see that it can be made easily portable. Perhaps it is a useful way to make travelling in airplanes doable again.
Other than that, Helen was sick, and because we only have cell phones around here, nobody knew until 15 minutes into her shift. It was a big disruption to Mike and then Peter jumped in. It’s been a long time since Peter did a day shift. Basically I was pretty tired by the time his 6 hours were up. He was going to go out but he was tired too and fell asleep. Then Mike got stuck in a traffic jam and I was alone, in pain again, for 2 hours.
I didn’t do the stuff I should have done. It reminds me of January when all I could do was sit and play Freecell because my brain was too bloody tired to imagine doing anything else. Probably I should just go to bed!
I don’t know if you’ve noticed yet, but I keep trying to make things work – to fix the broken systems. For years we’ve used a manual that we wrote ourselves, and that I update regularly, performance reviews at least once a year, sometimes more often, mentors for the staff, circle meetings, circle teleconferences, etc. In the end, things get fucked up just about as much as when I don’t bother. It probably would be a lot more helpful to me personally if I just accepted that things get fucked up. I haven’t been left stranded since about 1975, I haven’t died, I still have a home and don’t have to declare bankruptcy yet, lots of people admire my work and are inspired by me – and so far so good – I can still pay my staff. I can imagine that I could be satisfied. But I’m not! I’m grumpy!
I think it’s the money thing. I have written about it before a couple of times. Money used to come quite easily to me even though I took no particular pains to hang on to it. Now, it’s always a one month to the next thing. Largely I am very successful. 15 months in this apartment and the rent has been paid on time each and every month. Just the same, I get anxious when I can’t see beyond two weeks from now. I feel like I’ve lost my luck or my nerve or something. I get brought down by that funny feeling that somehow I’m not carrying my weight. I am, but I don’t feel like it.
It’s ridiculous and I know it and I’m almost ashamed to admit it. However, the weight is there in my head, in my words, in my language, in my thinking and in other people’s way of thinking and it has somehow crept into me.
It is my intention to not pay any more attention to it, and in fact to create something much more empowering. It is my intention to be at peace, and not brought down by this invented sense of scarcity.
At the same time, there is work to be done to find and/or raise the money that I need, and I’m not doing the work. That is what must change. That is what I am committed to.
Change is kind of a sneaky beast. I was looking out my bedroom window at about 11:15 this morning, waiting for Caleb to pick up his glasses that he left here two weeks ago. The crane that is between New Toronto St. and the GO Train tracks began to move west at a stately but ponderous rate – probably about 5 km/hour. It became apparent that it is also on one of the train tracks. Very slowly I was able to see that people were harnessing one of those very large grey cubes that look like a modular section of a prefab building. The “stevedores” raised the cube – maybe 3 feet – and then nothing happened for a good half hour. Was it lunch break? I had to leave and when I returned at about 3:30 the cube was gone, the crane was still sitting there, and there is no way that I can tell what happened. I will just have to keep on watching.
Will I master money in such a slow and invisible way? Will I wake up one morning and realize that I’m fully funded for my personal assistants forever, that I have an equally beautiful condo that has a similar view in the same neighbourhood that is fully paid for, that I am able to be generous with friend and stranger alike? So be it!
Childish, isn’t it?!?
It’s been one of those days. The good part was that I went to the pain clinic again and got to try a TENS machine. I was quite doubtful, but the 20 minutes I did spend on it were quite comfortable. I can see that it can be made easily portable. Perhaps it is a useful way to make travelling in airplanes doable again.
Other than that, Helen was sick, and because we only have cell phones around here, nobody knew until 15 minutes into her shift. It was a big disruption to Mike and then Peter jumped in. It’s been a long time since Peter did a day shift. Basically I was pretty tired by the time his 6 hours were up. He was going to go out but he was tired too and fell asleep. Then Mike got stuck in a traffic jam and I was alone, in pain again, for 2 hours.
I didn’t do the stuff I should have done. It reminds me of January when all I could do was sit and play Freecell because my brain was too bloody tired to imagine doing anything else. Probably I should just go to bed!
I don’t know if you’ve noticed yet, but I keep trying to make things work – to fix the broken systems. For years we’ve used a manual that we wrote ourselves, and that I update regularly, performance reviews at least once a year, sometimes more often, mentors for the staff, circle meetings, circle teleconferences, etc. In the end, things get fucked up just about as much as when I don’t bother. It probably would be a lot more helpful to me personally if I just accepted that things get fucked up. I haven’t been left stranded since about 1975, I haven’t died, I still have a home and don’t have to declare bankruptcy yet, lots of people admire my work and are inspired by me – and so far so good – I can still pay my staff. I can imagine that I could be satisfied. But I’m not! I’m grumpy!
I think it’s the money thing. I have written about it before a couple of times. Money used to come quite easily to me even though I took no particular pains to hang on to it. Now, it’s always a one month to the next thing. Largely I am very successful. 15 months in this apartment and the rent has been paid on time each and every month. Just the same, I get anxious when I can’t see beyond two weeks from now. I feel like I’ve lost my luck or my nerve or something. I get brought down by that funny feeling that somehow I’m not carrying my weight. I am, but I don’t feel like it.
It’s ridiculous and I know it and I’m almost ashamed to admit it. However, the weight is there in my head, in my words, in my language, in my thinking and in other people’s way of thinking and it has somehow crept into me.
It is my intention to not pay any more attention to it, and in fact to create something much more empowering. It is my intention to be at peace, and not brought down by this invented sense of scarcity.
At the same time, there is work to be done to find and/or raise the money that I need, and I’m not doing the work. That is what must change. That is what I am committed to.
Change is kind of a sneaky beast. I was looking out my bedroom window at about 11:15 this morning, waiting for Caleb to pick up his glasses that he left here two weeks ago. The crane that is between New Toronto St. and the GO Train tracks began to move west at a stately but ponderous rate – probably about 5 km/hour. It became apparent that it is also on one of the train tracks. Very slowly I was able to see that people were harnessing one of those very large grey cubes that look like a modular section of a prefab building. The “stevedores” raised the cube – maybe 3 feet – and then nothing happened for a good half hour. Was it lunch break? I had to leave and when I returned at about 3:30 the cube was gone, the crane was still sitting there, and there is no way that I can tell what happened. I will just have to keep on watching.
Will I master money in such a slow and invisible way? Will I wake up one morning and realize that I’m fully funded for my personal assistants forever, that I have an equally beautiful condo that has a similar view in the same neighbourhood that is fully paid for, that I am able to be generous with friend and stranger alike? So be it!
Tuesday, December 14, 2010
December 14, 2010
I don’t feel much like writing. It’s been a busy day – a Laser Eagles fund raising planning meeting, Laser Eagles itself where I painted five small pieces, a little shopping and finally a Book of Judith debrief. Interspersed were the usual things that add up to hours and hours of time allocated – getting up, bedpan trips, getting to, in, out and away from the car (especially in winter where cleaning the wheelchair wheels becomes part of the process), e-mail, (Farmville!), eating and preparing for the next – meal, day, meeting, project, assistant, etc. There are days and parts of days where one more interruption, thought, task, whatever seems much, much too much. Today has been like that!
On top of this is the nagging question in my head – “Am I actually doing anything?” Someone today asked me, “What’s new?”, and I had no answer except, “The ROM”, which she already knew about. Why is it that so much energy and activity is expended on so little? Even more, what compels me either to be always “doing” or asking “Why”.
Anyway it seems like a chore to write tonight, yet important to keep on going. It’s a commitment now, and keeping it helps me continue to have faith in myself.
Part of it is to keep on capturing the edges of this fabulous moment in my life when inclusion is emerging at an entirely new level. Here are recent examples:
- real progress with letting go and having something that I created and care about be picked up and nurtured by others – Kimberley with Laser Eagles, Mike with WPIT
- inching patiently through the structures and processes of the ROM so that they may genuinely be partners in creating something inclusive
- living in my home and neighbourhood like I actually want to and do belong here
- sneaking up on writing another book
- designing with colleagues a touring version of the Book of Judith that is authentically vulnerable and will draw host communities into the inclusive experience
- staying in a role on the Toronto Wisdom City Team for more than a few months, confronting what hasn’t worked and taking on reaching new successes.
Now a real question is, “Can I make all of this packaged in the sort of profile that I will get paid enough money so that my living AND enhanced participation costs are paid, and my personal assistants’ wages are covered ongoingly - deep into the future?”
Can my art and my writing make money?
Can my ideas, dreams and experience make money?
Why not? Somehow it seems more likely that they can and always could except where I have been putting unnecessary barriers in the way.
I have a friend whose advice I am seeking regularly about money who says it is simply a matter of saying what I am going to do to make money, then doing it. No more hype, getting ready, anxiety, whatever – just choose to do something, then do it!
I have had considerable practice with just that and creating these daily writings.
Now I will copy the pattern over to making money!
On top of this is the nagging question in my head – “Am I actually doing anything?” Someone today asked me, “What’s new?”, and I had no answer except, “The ROM”, which she already knew about. Why is it that so much energy and activity is expended on so little? Even more, what compels me either to be always “doing” or asking “Why”.
Anyway it seems like a chore to write tonight, yet important to keep on going. It’s a commitment now, and keeping it helps me continue to have faith in myself.
Part of it is to keep on capturing the edges of this fabulous moment in my life when inclusion is emerging at an entirely new level. Here are recent examples:
- real progress with letting go and having something that I created and care about be picked up and nurtured by others – Kimberley with Laser Eagles, Mike with WPIT
- inching patiently through the structures and processes of the ROM so that they may genuinely be partners in creating something inclusive
- living in my home and neighbourhood like I actually want to and do belong here
- sneaking up on writing another book
- designing with colleagues a touring version of the Book of Judith that is authentically vulnerable and will draw host communities into the inclusive experience
- staying in a role on the Toronto Wisdom City Team for more than a few months, confronting what hasn’t worked and taking on reaching new successes.
Now a real question is, “Can I make all of this packaged in the sort of profile that I will get paid enough money so that my living AND enhanced participation costs are paid, and my personal assistants’ wages are covered ongoingly - deep into the future?”
Can my art and my writing make money?
Can my ideas, dreams and experience make money?
Why not? Somehow it seems more likely that they can and always could except where I have been putting unnecessary barriers in the way.
I have a friend whose advice I am seeking regularly about money who says it is simply a matter of saying what I am going to do to make money, then doing it. No more hype, getting ready, anxiety, whatever – just choose to do something, then do it!
I have had considerable practice with just that and creating these daily writings.
Now I will copy the pattern over to making money!
Friday, December 10, 2010
December 10, 2010
It’s very late and I am just getting down to the writing. It’s so tempting to simply dig up another old article. If I can’t find one I can feel good about, then there are so many old e-mails. It would take much more digging and editing to reuse them. I have promised myself for years that “someday” I will do just that – dig and edit – pan for gold?!?
But I don’t want to lose the discipline of writing to bring forth expression over communication. Reusing what I have done before is not the same as newly writing. I am not saying I was “bad” to post articles for three nights. It was a sort of expression for sure – an expression of me accommodating to a “waiting” time within myself. But posting old articles is not the process that encourages me to dig in and reach for as yet uncreated words that are true for me right now.
It is a new discipline for me to not be trying to prove something to someone. When I have written before this blog I was either trying to find my own voice within a space where many other voices were tempting me or insisting that I say something else, or I was trying to push back another – usually hegemonic – voice, or I was trying to explain something. It is not that those impulses are not present now – they are! Rather this writing is intended to be more like painting. It is more about seeing differently who I am for no other reason than seeing it.
It is not a pure motivation. It is all jumbled together. I do, however, get real, seemingly accidental, glimpses of created point of view – me simply perceiving.
It’s worth writing at 11:30pm to get those glimpses and I don’t want to get too lazy to keep the space within which they occur.
Jen, the masseuse, was here today. She has begun to focus some of her time on my head – cranial-sacral work. Working near my eyes brought a new vision. I saw two divergent rows of crystal butterflies, still and hard, translucent and shining, and yet vibrantly alive.
I believe that I have great capacity for creativity and for dreaming. In this vision I had the impression that I have much greater capacity for creativity and for dreaming than I have been aware of – in the sense that I did not realize that such a capacity was available to a human being – not just not available before to me.
I had (have?) a deeper sense of the value of dreaming. I dream powerfully. In this world the time given to dream is greatly truncated. In this vision I felt grateful and centred in acknowledging my role and gift as a dreamer. I could clearly see that, although dreaming isn’t all there is to creating reality, it IS fundamental, and not just at the beginning of things, but all the way through.
My odd body includes a vast projection room where dreaming goes on continuously. My oversized head includes a brain within which unlimited “holographic” designs of potential futures are easily constructed and shifted. Apparently my capacity is exceptional and even largely untapped by ME.
When Sarah, Michael and I were talking to ROM people today I was very strengthened by my awareness that I can continuously dream in spaces where people are saying “No” to parts of the picture. It simply requires a shift, not an end. By the end of our hour together, there was a clear sense that everyone was in “Yes” space!
But I don’t want to lose the discipline of writing to bring forth expression over communication. Reusing what I have done before is not the same as newly writing. I am not saying I was “bad” to post articles for three nights. It was a sort of expression for sure – an expression of me accommodating to a “waiting” time within myself. But posting old articles is not the process that encourages me to dig in and reach for as yet uncreated words that are true for me right now.
It is a new discipline for me to not be trying to prove something to someone. When I have written before this blog I was either trying to find my own voice within a space where many other voices were tempting me or insisting that I say something else, or I was trying to push back another – usually hegemonic – voice, or I was trying to explain something. It is not that those impulses are not present now – they are! Rather this writing is intended to be more like painting. It is more about seeing differently who I am for no other reason than seeing it.
It is not a pure motivation. It is all jumbled together. I do, however, get real, seemingly accidental, glimpses of created point of view – me simply perceiving.
It’s worth writing at 11:30pm to get those glimpses and I don’t want to get too lazy to keep the space within which they occur.
Jen, the masseuse, was here today. She has begun to focus some of her time on my head – cranial-sacral work. Working near my eyes brought a new vision. I saw two divergent rows of crystal butterflies, still and hard, translucent and shining, and yet vibrantly alive.
I believe that I have great capacity for creativity and for dreaming. In this vision I had the impression that I have much greater capacity for creativity and for dreaming than I have been aware of – in the sense that I did not realize that such a capacity was available to a human being – not just not available before to me.
I had (have?) a deeper sense of the value of dreaming. I dream powerfully. In this world the time given to dream is greatly truncated. In this vision I felt grateful and centred in acknowledging my role and gift as a dreamer. I could clearly see that, although dreaming isn’t all there is to creating reality, it IS fundamental, and not just at the beginning of things, but all the way through.
My odd body includes a vast projection room where dreaming goes on continuously. My oversized head includes a brain within which unlimited “holographic” designs of potential futures are easily constructed and shifted. Apparently my capacity is exceptional and even largely untapped by ME.
When Sarah, Michael and I were talking to ROM people today I was very strengthened by my awareness that I can continuously dream in spaces where people are saying “No” to parts of the picture. It simply requires a shift, not an end. By the end of our hour together, there was a clear sense that everyone was in “Yes” space!
Thursday, December 9, 2010
December 9, 2010
One more article! (I promise I will write anew tomorrow.)
The Story
by Judith A. Snow, MA
Prologue
Many groups of people who are marginalized today have a history of their people that gives an explanation of present day reality. For example, African-Americans
and African-Canadians have stories that tell how their ancestors were enslaved and brought to North America. Stories tell how some were guided by maps encoded into songs as they traveled the "underground railroad" and escaped to freedom.
These traditional stories give current members of the group, especially the children, an explanation for the poverty, discrimination, exploitation and hostility
they experience in the present. As the child grows, she or he may reject these interpretations and adopt or invent others. Even so, the stories have served a purpose. The stories give members of the group a way to defend themselves against the negative stereotypes that are attributed to them by others who have the power to discriminate and exploit.
Even while the material effects of marginalization are being experienced, the child has an inner anchor to sustain a positive identity for herself or himself. It
can be remembered that it is not her or his inevitable fate to be so abused. The opportunity remains to find a way to work for greater freedom and respect.
Children labeled with disability come to this world as members of every cultural group that occupies this world. Almost always they are born to parents who are
not themselves viewed as disabled. Those who surround them are almost always unfamiliar with the fact that handicappist stereotyping disguises and renders invisible the person's actual abilities and contributions. Their parents have no story to counter the negative beliefs about bodies and minds that function in unusual ways. In fact, their parents may very likely be champions of these stereotypes.
In such situations children have no way of knowing that there are other ways of knowing themselves. They cannot know how to resist adopting these beliefs about themselves. In other words, a labeled child has no choice but to understand themselves as broken, as being a "mistake" or a "defect", as being fundamentally incapable and irresponsible, as being a helpless misfit who is less than able.
For better or worse, human beings are easily molded by and adapt to the symbolic realities that we proclaim to each other. If I say the little white pill will take the pain away, sugar becomes a powerful analgesic. If enough of us believe you are dying, you are very likely to die. Consequently, the child who is labeled as "disabled" inevitably becomes a disabled child - broken, helpless and unable.
When I was seven months of age I was diagnosed as having Spinal Muscular Atrophy, a form of Muscular Dystrophy. I was labeled "severely physically disabled". When I was six years old I remember my father telling me that some U.S. doctors were putting children labeled "mentally retarded" to death, saying
that society should not have to bear the burden of caring for these children. Dad, who grew up in rural England, explained that in his youth children with "mental retardation" were able to grow potatoes along with everyone else. They were a regular, accepted part of his community. But children like me were killed. People felt they did not have enough resources to support someone who would likely not be able to grow food.
My father's story was harsh. But that is not what I heard when I was six. I heard that I had enemies and that I had better pay attention. I heard that he and Mom were going against the mainstream and that meant they loved me and that we were all vulnerable. I heard that the way to gain acceptance among strangers was to contribute to the well-being of the community.
Outside of this one occasion I was raised without an orientation to the prejudice daily inculcated into my being. I was in my thirties before it really began to occur to me that I was my own worst enemy. I had adopted all the ableist stereotypes as being realities of my true self. Consequently I cooperated while others,
wittingly or not, hurt my body, deflected my mind, impoverished my circumstances, and diminished my abilities and contributions.
I have long thought that living as a labeled person requires the skills to live as an alien in a misunderstanding, often hostile, foreign territory. It would be helpful to have an orientation to the ways of the foreign inhabitants. I often have wished to have a reorienting story, such as might have been told to me as I sat in my mother's lap, still a babe, if my mother had known I needed such a story. I invented such a story.
The Story
by Judith A. Snow, MA
You are not from here. You are more like the people who are from here than they can imagine. But they find it difficult to see you for who you are or to like you.
You have chosen to live your life among these people. This is a dangerous choice. You made this choice because you love these people. They need you.
You must remember that it takes a long time for most of these people to see that you are alive, and that you have a heart, and that you are trying to give something to them.
Some of them will never see you as anything more than a puppet at best. You must find people who will see that you are alive. You must help them over and over again to keep on seeing that you are alive. If you do not help people to see that you are alive, you will fall asleep. The only life you will have is the life of a
puppet filled with other people's stories. They may grow tired of playing with you; they may break you; they may throw you away; they may destroy you.
When you find people who can see you, you must learn to live among them. You must learn to believe most of what they believe, and to act in most of the same ways as they act. People who can see you will tell you how to do this. You must listen closely and watch carefully even when it is tiresome. If you do not strive to become like them, the others who cannot see you will drive you away. Even those who can see you will not be able to hold on to you.
However, you must not strive to be completely like these people or you will break yourself.
While you are among these people you must constantly search for ways to hang on to your true self and your true way of being even while you are acting like others as much as possible. As some of these people get to know you better and better they can help you find your true self and your own way of being.
Be courageous in asking these people to help you be your true self. Be courageous in doing this even when it hurts you and when it hurts them. It is your way to love these people. It is your way to heal them. It is your way to help them renew themselves. It is why you are choosing to live among them.
The Story
by Judith A. Snow, MA
Prologue
Many groups of people who are marginalized today have a history of their people that gives an explanation of present day reality. For example, African-Americans
and African-Canadians have stories that tell how their ancestors were enslaved and brought to North America. Stories tell how some were guided by maps encoded into songs as they traveled the "underground railroad" and escaped to freedom.
These traditional stories give current members of the group, especially the children, an explanation for the poverty, discrimination, exploitation and hostility
they experience in the present. As the child grows, she or he may reject these interpretations and adopt or invent others. Even so, the stories have served a purpose. The stories give members of the group a way to defend themselves against the negative stereotypes that are attributed to them by others who have the power to discriminate and exploit.
Even while the material effects of marginalization are being experienced, the child has an inner anchor to sustain a positive identity for herself or himself. It
can be remembered that it is not her or his inevitable fate to be so abused. The opportunity remains to find a way to work for greater freedom and respect.
Children labeled with disability come to this world as members of every cultural group that occupies this world. Almost always they are born to parents who are
not themselves viewed as disabled. Those who surround them are almost always unfamiliar with the fact that handicappist stereotyping disguises and renders invisible the person's actual abilities and contributions. Their parents have no story to counter the negative beliefs about bodies and minds that function in unusual ways. In fact, their parents may very likely be champions of these stereotypes.
In such situations children have no way of knowing that there are other ways of knowing themselves. They cannot know how to resist adopting these beliefs about themselves. In other words, a labeled child has no choice but to understand themselves as broken, as being a "mistake" or a "defect", as being fundamentally incapable and irresponsible, as being a helpless misfit who is less than able.
For better or worse, human beings are easily molded by and adapt to the symbolic realities that we proclaim to each other. If I say the little white pill will take the pain away, sugar becomes a powerful analgesic. If enough of us believe you are dying, you are very likely to die. Consequently, the child who is labeled as "disabled" inevitably becomes a disabled child - broken, helpless and unable.
When I was seven months of age I was diagnosed as having Spinal Muscular Atrophy, a form of Muscular Dystrophy. I was labeled "severely physically disabled". When I was six years old I remember my father telling me that some U.S. doctors were putting children labeled "mentally retarded" to death, saying
that society should not have to bear the burden of caring for these children. Dad, who grew up in rural England, explained that in his youth children with "mental retardation" were able to grow potatoes along with everyone else. They were a regular, accepted part of his community. But children like me were killed. People felt they did not have enough resources to support someone who would likely not be able to grow food.
My father's story was harsh. But that is not what I heard when I was six. I heard that I had enemies and that I had better pay attention. I heard that he and Mom were going against the mainstream and that meant they loved me and that we were all vulnerable. I heard that the way to gain acceptance among strangers was to contribute to the well-being of the community.
Outside of this one occasion I was raised without an orientation to the prejudice daily inculcated into my being. I was in my thirties before it really began to occur to me that I was my own worst enemy. I had adopted all the ableist stereotypes as being realities of my true self. Consequently I cooperated while others,
wittingly or not, hurt my body, deflected my mind, impoverished my circumstances, and diminished my abilities and contributions.
I have long thought that living as a labeled person requires the skills to live as an alien in a misunderstanding, often hostile, foreign territory. It would be helpful to have an orientation to the ways of the foreign inhabitants. I often have wished to have a reorienting story, such as might have been told to me as I sat in my mother's lap, still a babe, if my mother had known I needed such a story. I invented such a story.
The Story
by Judith A. Snow, MA
You are not from here. You are more like the people who are from here than they can imagine. But they find it difficult to see you for who you are or to like you.
You have chosen to live your life among these people. This is a dangerous choice. You made this choice because you love these people. They need you.
You must remember that it takes a long time for most of these people to see that you are alive, and that you have a heart, and that you are trying to give something to them.
Some of them will never see you as anything more than a puppet at best. You must find people who will see that you are alive. You must help them over and over again to keep on seeing that you are alive. If you do not help people to see that you are alive, you will fall asleep. The only life you will have is the life of a
puppet filled with other people's stories. They may grow tired of playing with you; they may break you; they may throw you away; they may destroy you.
When you find people who can see you, you must learn to live among them. You must learn to believe most of what they believe, and to act in most of the same ways as they act. People who can see you will tell you how to do this. You must listen closely and watch carefully even when it is tiresome. If you do not strive to become like them, the others who cannot see you will drive you away. Even those who can see you will not be able to hold on to you.
However, you must not strive to be completely like these people or you will break yourself.
While you are among these people you must constantly search for ways to hang on to your true self and your true way of being even while you are acting like others as much as possible. As some of these people get to know you better and better they can help you find your true self and your own way of being.
Be courageous in asking these people to help you be your true self. Be courageous in doing this even when it hurts you and when it hurts them. It is your way to love these people. It is your way to heal them. It is your way to help them renew themselves. It is why you are choosing to live among them.
Tuesday, December 7, 2010
December 7, 2010
I have been actively writing a brief for the ROM so tonight I will share something I wrote in March, 2001.
Thoughts on Self Determination
I was searching on the internet the other day and I found that the phrase “self determination” brought up a large number of articles on political sovereignty for colonized nations and for aboriginal groups. This got me to thinking again about the use these words when people talk about and plan with people who are labeled disabled.
Most groups in the world gained their distinctive identity because they have a definite geographical or ecological boundary, or because they share a culture. In my country, Canada, there are aboriginal groups who descend from people who lived as prairie hunters or woodland gatherers or tundra dwellers. Today they are fighting for their sovereignty -- their right to decide for themselves how to use their own resources, solve their own problems and conduct their own business, education and government. Also, the people who are descendants of settlers from France are also fighting for their self determination in Canada -- their sovereignty. They have remained a distinct group in the broader Canadian population because their language is still strong and vital, able to be used in everyday affairs of business and politics. French speaking people live mostly in the province of Quebec and so this group also has a geographic location and definition.
Are people who have been classified as disabled such a group? I don’t think so. Rather than being naturally a separate group, we are born, or acquire our “disability” identity, everywhere among people. We share every geography, ecology, language and culture with all human beings.
The term “self determination” is used in a different way when we are thinking of people who are labeled disabled. For us self determination is defined -- not as sovereignty -- but as Freedom, Authority, Support, and Responsibility. Advocates of self determination for people who are called disabled view these principles as the cornerstones that are required for a person to live a life of full participation in society.
Ever since I first heard the words “self determination” used in relationship to people who are considered disabled I have not liked this term. Don’t get me wrong. I work everyday to help make it possible for everyone to live in their own communities, choose their own homes and life styles, get good incomes, be respected, have friends and loved ones, and make the contributions they want to make through employment or in other ways that make sense to them.
It’s just that people who have great lives are not independent and not self determined -- no matter whether they are labeled able or disabled. All human life is made possible through relationship. Everything we know, everything we choose, everything we learn or do is in some way connected to other human beings. It is not more separateness that leads to vibrant lives of contribution, it is a better quality of relationship and cooperation. Independence does not lead to sovereignty in one’s own life -- the right sorts of relationship do!
The more powerful and fulfilled a person is the better is the quality of her or his relationships with other people. Powerful people influence and are influenced by thousands of other people. People listen to them and respect them -- they themselves also listen to and respect many other people. People who are fulfilled make choices based on knowledge and support garnered in a vast array of relationship -- personal and public, paid and unpaid, intimate and casual.
In other words a really good way to stay poor and isolated and unable to have a very good life is to keep trying to be independent!
“Disability” is really a lie. “Disability” is the idea that some people, because their bodies or minds or emotions function in ways that are unusual, are somehow unable to live fully as human beings. The truth is that every human being has some ordinary ways of being and some unusual ways. Everyone suffers sometimes and has burdens and sometimes burdens others. Everyone also has times of joy, sometimes gives something to someone else, and has the possibility of creating opportunity for others in the world. Paradoxically the most common thing about people is that everyone has unique ways of being themselves.
In our world the disability label is used as a way to set people apart from society. In other words “disability” is used as an excuse to deny us the sort of relationships and cooperation that would allow us to take our full place along side of other citizens in a diverse community.
There really is no lack of money or resources. And although there is always room for learning better ways to support people, we really do know basically how to include everyone together in one world. The question is: “Will we?”
The question: “Will we?” is not a question of personal independence and self determination. It is a question of relationship and politics. We are all citizens, regardless of ability. How are people who are called disabled going to take their full place in the world? We all need to take a part in answering this question.
A mistaken sense that self determination is the concern of one individual has often led to more of the same old thing. Those who don’t understand or want full participation everywhere can easily dress up segregation and oppression as choice. Too often, for example, a person is offered a “choice” between a group home, isolated living in an agency owned apartment or living as a paying guest in someone else’s family. Choosing between options that all are designed to keep you small is not real citizenship, whether or not it is self determination.
Advocates, family members and we who are labeled disabled must seek a deeper vision. We are human and society must reflect our human reality as much as it reflects the human reality of those who imagine their abilities are perfect and permanent. We must imagine a society where our unique and our ordinary contributions are opportunities for everyone and where we fundamentally belong. Such a society is the birthright of all people.
In the long run perhaps it doesn‘t really matter whether advocates continue to use the words “independent” and “self determination”. What matters, I believe, is that we continue to spread the vision that all abilities are needed in community to make the world complete and whole. Let us continue to work to make this vision real.
Thoughts on Self Determination
I was searching on the internet the other day and I found that the phrase “self determination” brought up a large number of articles on political sovereignty for colonized nations and for aboriginal groups. This got me to thinking again about the use these words when people talk about and plan with people who are labeled disabled.
Most groups in the world gained their distinctive identity because they have a definite geographical or ecological boundary, or because they share a culture. In my country, Canada, there are aboriginal groups who descend from people who lived as prairie hunters or woodland gatherers or tundra dwellers. Today they are fighting for their sovereignty -- their right to decide for themselves how to use their own resources, solve their own problems and conduct their own business, education and government. Also, the people who are descendants of settlers from France are also fighting for their self determination in Canada -- their sovereignty. They have remained a distinct group in the broader Canadian population because their language is still strong and vital, able to be used in everyday affairs of business and politics. French speaking people live mostly in the province of Quebec and so this group also has a geographic location and definition.
Are people who have been classified as disabled such a group? I don’t think so. Rather than being naturally a separate group, we are born, or acquire our “disability” identity, everywhere among people. We share every geography, ecology, language and culture with all human beings.
The term “self determination” is used in a different way when we are thinking of people who are labeled disabled. For us self determination is defined -- not as sovereignty -- but as Freedom, Authority, Support, and Responsibility. Advocates of self determination for people who are called disabled view these principles as the cornerstones that are required for a person to live a life of full participation in society.
Ever since I first heard the words “self determination” used in relationship to people who are considered disabled I have not liked this term. Don’t get me wrong. I work everyday to help make it possible for everyone to live in their own communities, choose their own homes and life styles, get good incomes, be respected, have friends and loved ones, and make the contributions they want to make through employment or in other ways that make sense to them.
It’s just that people who have great lives are not independent and not self determined -- no matter whether they are labeled able or disabled. All human life is made possible through relationship. Everything we know, everything we choose, everything we learn or do is in some way connected to other human beings. It is not more separateness that leads to vibrant lives of contribution, it is a better quality of relationship and cooperation. Independence does not lead to sovereignty in one’s own life -- the right sorts of relationship do!
The more powerful and fulfilled a person is the better is the quality of her or his relationships with other people. Powerful people influence and are influenced by thousands of other people. People listen to them and respect them -- they themselves also listen to and respect many other people. People who are fulfilled make choices based on knowledge and support garnered in a vast array of relationship -- personal and public, paid and unpaid, intimate and casual.
In other words a really good way to stay poor and isolated and unable to have a very good life is to keep trying to be independent!
“Disability” is really a lie. “Disability” is the idea that some people, because their bodies or minds or emotions function in ways that are unusual, are somehow unable to live fully as human beings. The truth is that every human being has some ordinary ways of being and some unusual ways. Everyone suffers sometimes and has burdens and sometimes burdens others. Everyone also has times of joy, sometimes gives something to someone else, and has the possibility of creating opportunity for others in the world. Paradoxically the most common thing about people is that everyone has unique ways of being themselves.
In our world the disability label is used as a way to set people apart from society. In other words “disability” is used as an excuse to deny us the sort of relationships and cooperation that would allow us to take our full place along side of other citizens in a diverse community.
There really is no lack of money or resources. And although there is always room for learning better ways to support people, we really do know basically how to include everyone together in one world. The question is: “Will we?”
The question: “Will we?” is not a question of personal independence and self determination. It is a question of relationship and politics. We are all citizens, regardless of ability. How are people who are called disabled going to take their full place in the world? We all need to take a part in answering this question.
A mistaken sense that self determination is the concern of one individual has often led to more of the same old thing. Those who don’t understand or want full participation everywhere can easily dress up segregation and oppression as choice. Too often, for example, a person is offered a “choice” between a group home, isolated living in an agency owned apartment or living as a paying guest in someone else’s family. Choosing between options that all are designed to keep you small is not real citizenship, whether or not it is self determination.
Advocates, family members and we who are labeled disabled must seek a deeper vision. We are human and society must reflect our human reality as much as it reflects the human reality of those who imagine their abilities are perfect and permanent. We must imagine a society where our unique and our ordinary contributions are opportunities for everyone and where we fundamentally belong. Such a society is the birthright of all people.
In the long run perhaps it doesn‘t really matter whether advocates continue to use the words “independent” and “self determination”. What matters, I believe, is that we continue to spread the vision that all abilities are needed in community to make the world complete and whole. Let us continue to work to make this vision real.
Sunday, December 5, 2010
December 5, 2010
Tonight I will write some about how I am designing the exhibit - in my head.
To reiterate, I want people to be exposed to and potentially fall in love with the understanding that Inclusion is a multi-dimensional approach to building a vibrant society where social and economic benefits accrue from garnering the gifts of diversity.
The room lends itself neatly to the paradigm of structuring inclusive support that I used to call Harmonizing the Four Things Worth Doing – the paradigm that formed much of the basis of the 1991 book: “What’s Really Worth Doing and How to Do It”, still available through Inclusion Press. It looks like this:
Harmonizing the Four Things Worth Doing
The regular path that visitors who are merely going through the room with no intention of staying will be clearly marked as “The Normal Path – Do Not Stop or Look Around”. All along it will be enticements to step aside and stay awhile, learn something and stay awhile.
In addition, the room will be conceptually divided into three layers. The middle layer will be for language, including talking videos, text and more realistic paintings. The floor to about 3 ½ feet up will be for playful, interactive and colourful objects and paintings. Six feet up will be for projections, both colourful and those statements and photographs captured and recorded by visitors.
The groupings of videos, pictures and photographs on the central panel will focus on dreaming. The rest of the display space will focus on place, people and resources, indicating how different communities in my life have shaped my expressions of inclusion. Finally the “dead” space between the “Normal Road” and the fourth wall will be reserved for statements about barriers, such as hanging my first framed painting where my tracker was an art therapist who claimed that my work wasn’t art.
I will find ways to include other artists such as Felicia G. and Irena K. The intention is to show, first, that I am not unique among artists as a person who does not sit easily with being labelled disabled, and secondly, that I have influenced such artists.
Preliminary thoughts! More soon!
To reiterate, I want people to be exposed to and potentially fall in love with the understanding that Inclusion is a multi-dimensional approach to building a vibrant society where social and economic benefits accrue from garnering the gifts of diversity.
The room lends itself neatly to the paradigm of structuring inclusive support that I used to call Harmonizing the Four Things Worth Doing – the paradigm that formed much of the basis of the 1991 book: “What’s Really Worth Doing and How to Do It”, still available through Inclusion Press. It looks like this:
Harmonizing the Four Things Worth Doing
The regular path that visitors who are merely going through the room with no intention of staying will be clearly marked as “The Normal Path – Do Not Stop or Look Around”. All along it will be enticements to step aside and stay awhile, learn something and stay awhile.
In addition, the room will be conceptually divided into three layers. The middle layer will be for language, including talking videos, text and more realistic paintings. The floor to about 3 ½ feet up will be for playful, interactive and colourful objects and paintings. Six feet up will be for projections, both colourful and those statements and photographs captured and recorded by visitors.
The groupings of videos, pictures and photographs on the central panel will focus on dreaming. The rest of the display space will focus on place, people and resources, indicating how different communities in my life have shaped my expressions of inclusion. Finally the “dead” space between the “Normal Road” and the fourth wall will be reserved for statements about barriers, such as hanging my first framed painting where my tracker was an art therapist who claimed that my work wasn’t art.
I will find ways to include other artists such as Felicia G. and Irena K. The intention is to show, first, that I am not unique among artists as a person who does not sit easily with being labelled disabled, and secondly, that I have influenced such artists.
Preliminary thoughts! More soon!
Wednesday, December 1, 2010
December 1, 2010
Today I am thinking about money. ODSP cut me off last month – again – and although I was able to get reinstated with no great difficulty the deposit did not arrive in my bank until this morning. I would have been in the position of having to draw further on my line of credit to pay my rent if it had not come when it did.
As a child I considered myself rich, but I was very distrustful of money. In grade three I was “befriended” by a girl who was by far the dirtiest and most unsavoury character I had met up until that point. I was in a way her captive audience as I was wheeled about in those days in a manual wheelchair over which I had no control. I imagine that adults, including my parents, threw us together because neither of us had friends and they felt we deserved each other. One day Mother gave me a quarter and sent Darlene and I off to the library to register and get a book. Along the way Darlene took the quarter and with that sort of persuasion that goes: “You really want to do this, don’t you!” bought ice cream. I don’t recall eating any ice cream or what lie we concocted to explain why we came back without a book. I do recall the fear, intimidation and disgust.
As a young teenager my aunts and uncles, particularly Uncle Ted, would give my two brothers and myself dimes and quarters whenever they visited. I couldn’t get out to spend any of it and I enjoyed hoarding it in any case, so the stash in my underwear drawer grew to be $20.00 more than once. However, both my parents would “borrow” from my wallet with promises to repay. Often they didn’t keep those promises.
At sixteen the government of Ontario decided to give me a “Disabled Child Benefit” which meant that a small amount of money went to my parents on my behalf – something like $100 a month. When this started my Mother told me that I was essentially paying rent now and that I could ask for some things to be done differently. After that moment nothing changed and I never saw any part of the money either.
I know now that my parents paid out lots of money on my behalf and that they often struggled financially especially in the early years of their marriage. There is no person more generous than my Father is and my Mother was. These stories come to mind, not to put anyone down, least of all my parents, but by way of seeing why money means so little to me. I think I basically learned that money could get me into real trouble and that it never really belonged to me in any case so why bother thinking too much about it.
When I went to university the situation changed radically. First, I had a scholarship and secondly I had a benefit under the vocational rehabilitation section of the welfare department with “disabled adults” in its mandate. Thirdly, I had a different allowance from the same Ministry which gave me the capacity to hire students for a few hours every day to give me personal assistance. I had the great good fortune to be supervised by a social worker who interpreted her regulations in the most generous way possible. This meant that even when I worked during summers between terms, or sometimes mid-school year my benefits were never cut. I paid my own tuition, living costs, other people’s and my own beer and had friends!
Skip the dark years of the nursing home and chronic care hospital. $60 a month from the government as a “comfort allowance”. Even then I earned some $$’s on “the side”.
When I fundraised for, founded and became the first Coordinator of Special Services for Handicapped Students in 1977 I paid myself $19,000 a year. The University doubled the next Coordinator’s salary.
I did alright – never brilliantly – in the financial world until 2006 when I decided to retire from a job within which I could do nothing that made me happy. I had savings, a small grant from the Marsha Forest Centre, a small pension and I continued to have self employed income. I co-owned a house and three times renegotiated the mortgage over ten years to give myself another pot of money to draw on.
I left the job in 2006 to give myself a fighting chance to do what I really wanted to do with my life. That turned into being an artist and founding the World Peace through Inclusive Transformation.
I have NO regrets and I am on the edge of bankruptcy. For fourteen months I have marvelled month by month that I have found ways to pay my rent.
I wonder, and my friends do too, what happened to my capacity to have money. Now that I am writing this I see that I may have returned to thinking that money is something I have no control over and that it would pervert me through the Darlene’s of the world if I had it. But I am not eight and I have a very different perspective on what can make someone choose to be a dirty thief. I owe Darlene, her mother and mine an apology.
Now, let’s make some cash!
As a child I considered myself rich, but I was very distrustful of money. In grade three I was “befriended” by a girl who was by far the dirtiest and most unsavoury character I had met up until that point. I was in a way her captive audience as I was wheeled about in those days in a manual wheelchair over which I had no control. I imagine that adults, including my parents, threw us together because neither of us had friends and they felt we deserved each other. One day Mother gave me a quarter and sent Darlene and I off to the library to register and get a book. Along the way Darlene took the quarter and with that sort of persuasion that goes: “You really want to do this, don’t you!” bought ice cream. I don’t recall eating any ice cream or what lie we concocted to explain why we came back without a book. I do recall the fear, intimidation and disgust.
As a young teenager my aunts and uncles, particularly Uncle Ted, would give my two brothers and myself dimes and quarters whenever they visited. I couldn’t get out to spend any of it and I enjoyed hoarding it in any case, so the stash in my underwear drawer grew to be $20.00 more than once. However, both my parents would “borrow” from my wallet with promises to repay. Often they didn’t keep those promises.
At sixteen the government of Ontario decided to give me a “Disabled Child Benefit” which meant that a small amount of money went to my parents on my behalf – something like $100 a month. When this started my Mother told me that I was essentially paying rent now and that I could ask for some things to be done differently. After that moment nothing changed and I never saw any part of the money either.
I know now that my parents paid out lots of money on my behalf and that they often struggled financially especially in the early years of their marriage. There is no person more generous than my Father is and my Mother was. These stories come to mind, not to put anyone down, least of all my parents, but by way of seeing why money means so little to me. I think I basically learned that money could get me into real trouble and that it never really belonged to me in any case so why bother thinking too much about it.
When I went to university the situation changed radically. First, I had a scholarship and secondly I had a benefit under the vocational rehabilitation section of the welfare department with “disabled adults” in its mandate. Thirdly, I had a different allowance from the same Ministry which gave me the capacity to hire students for a few hours every day to give me personal assistance. I had the great good fortune to be supervised by a social worker who interpreted her regulations in the most generous way possible. This meant that even when I worked during summers between terms, or sometimes mid-school year my benefits were never cut. I paid my own tuition, living costs, other people’s and my own beer and had friends!
Skip the dark years of the nursing home and chronic care hospital. $60 a month from the government as a “comfort allowance”. Even then I earned some $$’s on “the side”.
When I fundraised for, founded and became the first Coordinator of Special Services for Handicapped Students in 1977 I paid myself $19,000 a year. The University doubled the next Coordinator’s salary.
I did alright – never brilliantly – in the financial world until 2006 when I decided to retire from a job within which I could do nothing that made me happy. I had savings, a small grant from the Marsha Forest Centre, a small pension and I continued to have self employed income. I co-owned a house and three times renegotiated the mortgage over ten years to give myself another pot of money to draw on.
I left the job in 2006 to give myself a fighting chance to do what I really wanted to do with my life. That turned into being an artist and founding the World Peace through Inclusive Transformation.
I have NO regrets and I am on the edge of bankruptcy. For fourteen months I have marvelled month by month that I have found ways to pay my rent.
I wonder, and my friends do too, what happened to my capacity to have money. Now that I am writing this I see that I may have returned to thinking that money is something I have no control over and that it would pervert me through the Darlene’s of the world if I had it. But I am not eight and I have a very different perspective on what can make someone choose to be a dirty thief. I owe Darlene, her mother and mine an apology.
Now, let’s make some cash!
Saturday, November 27, 2010
November 27, 2010
Once upon a time according to the calendar above my bed this was going to be a “do nothing” day. Ha, ha. I am busy dealing with contractual and fundraising issues that have already arisen days before my first official meeting with the ROM, and the shock to some of this sudden apparent change of plans.
I am not blaming anyone who thinks I am unreliable due to this sudden shift. I COULD have said “No” to the ROM. I could have said: “Sorry, I have been busy creating a very different spring, and I won’t have time for you.” I didn’t.
Anyway, enough of that. Nothing is “real” until contracts are signed and until then the emotional energy is best directed elsewhere, in my opinion.
So I went dancing.
There is an annual party put on by and for caregivers who are mostly women and mainly Philippino domestics who are intent on getting landed immigrant status in Canada while sending as much money home as possible to bring family members here. Another typical scenario is that they are saving to buy a home in the Philippines. I got to know several such people through a long term friendship with a man – Tim (now pronounced “Teem” since he married such a caregiver) who has a lifetime commitment to providing good support to vulnerable people.
I am aware that the situation surrounding “imported” caregivers is fraught with abuses and fundamentally is established to put these people at an economic disadvantage. However I have never met such a person who wasn’t enthusiastic about the arrangement. Those I have met seem to have been planning since early teenage to become either nurses or caregivers, to marry a man who will follow a similar path but in Saudia Arabia or Hong Kong, to meet up with him for six weeks every two years, and otherwise work six days a week and go to evangelistic church then party on the seventh. Five nights a week caregivers sleep at the “employer’s”, and on the other two nights they sleep two women to a bed in a two bedroom, eight person apartment.
It’s not an arrangement that many Canadians can fathom as a choice. Since running across this sub-culture I have marvelled.
One clear aspect of this lifestyle is that the women are very close to each other, hugging and kissing openly and frequently, dressing for each other – tonight they held a beauty pageant reminiscent of the “meat market” shows long out of favour in Canadian Caucasian culture – and paying much less attention to “eligible” men than I would expect in my familiar circles.
When they party they bring home cooked food and eat extravagantly, they sing and they dance – mostly with each other although men are not obviously excluded.
I love to dance when people are not coupling. When people are dancing in pairs moving a wheelchair on the dance floor can be an awkward and lonely effort. When it’s more free form, my presence seems to give people permission to strut their stuff in any way they can and to have a good time. People will try me out in ones or twos, doing their personal gyration for a short while, then move on. In the general moving on I get to go from person to person too, which is way easier to do in a wheelchair and more fun anyway to me.
Three times I have successfully done the couple thing on the dance floor, twice with a man. One guy and the woman are trained dancers, and all moulded their dance steps to the movements a wheelchair can actually do. I was able to keep up the dance in close “formation” for more than an hour – a feat of tremendous stamina and exhilaration for me and my partners.
I rarely get to dance. It’s something I love to do. Occasionally I remember and take steps to find an accessible place. Typically it’s too expensive or fixated on couple style dancing and I “forget” to pursue this pleasure.
But tonight I danced with Philippino women (and Teem). I had a great time. It is good to move my sore body again and to lose myself in the beat. It is a way to feel that I am “me”.
I am not blaming anyone who thinks I am unreliable due to this sudden shift. I COULD have said “No” to the ROM. I could have said: “Sorry, I have been busy creating a very different spring, and I won’t have time for you.” I didn’t.
Anyway, enough of that. Nothing is “real” until contracts are signed and until then the emotional energy is best directed elsewhere, in my opinion.
So I went dancing.
There is an annual party put on by and for caregivers who are mostly women and mainly Philippino domestics who are intent on getting landed immigrant status in Canada while sending as much money home as possible to bring family members here. Another typical scenario is that they are saving to buy a home in the Philippines. I got to know several such people through a long term friendship with a man – Tim (now pronounced “Teem” since he married such a caregiver) who has a lifetime commitment to providing good support to vulnerable people.
I am aware that the situation surrounding “imported” caregivers is fraught with abuses and fundamentally is established to put these people at an economic disadvantage. However I have never met such a person who wasn’t enthusiastic about the arrangement. Those I have met seem to have been planning since early teenage to become either nurses or caregivers, to marry a man who will follow a similar path but in Saudia Arabia or Hong Kong, to meet up with him for six weeks every two years, and otherwise work six days a week and go to evangelistic church then party on the seventh. Five nights a week caregivers sleep at the “employer’s”, and on the other two nights they sleep two women to a bed in a two bedroom, eight person apartment.
It’s not an arrangement that many Canadians can fathom as a choice. Since running across this sub-culture I have marvelled.
One clear aspect of this lifestyle is that the women are very close to each other, hugging and kissing openly and frequently, dressing for each other – tonight they held a beauty pageant reminiscent of the “meat market” shows long out of favour in Canadian Caucasian culture – and paying much less attention to “eligible” men than I would expect in my familiar circles.
When they party they bring home cooked food and eat extravagantly, they sing and they dance – mostly with each other although men are not obviously excluded.
I love to dance when people are not coupling. When people are dancing in pairs moving a wheelchair on the dance floor can be an awkward and lonely effort. When it’s more free form, my presence seems to give people permission to strut their stuff in any way they can and to have a good time. People will try me out in ones or twos, doing their personal gyration for a short while, then move on. In the general moving on I get to go from person to person too, which is way easier to do in a wheelchair and more fun anyway to me.
Three times I have successfully done the couple thing on the dance floor, twice with a man. One guy and the woman are trained dancers, and all moulded their dance steps to the movements a wheelchair can actually do. I was able to keep up the dance in close “formation” for more than an hour – a feat of tremendous stamina and exhilaration for me and my partners.
I rarely get to dance. It’s something I love to do. Occasionally I remember and take steps to find an accessible place. Typically it’s too expensive or fixated on couple style dancing and I “forget” to pursue this pleasure.
But tonight I danced with Philippino women (and Teem). I had a great time. It is good to move my sore body again and to lose myself in the beat. It is a way to feel that I am “me”.
Thursday, November 25, 2010
November 25, 2010
It’s relatively early in the day. I usually write these near 11:30pm and it’s just past 11:30am. I have just heard momentous news, and I am going to be writing e-mails to friends and colleagues everywhere. I figure I may as well do it this way, and take parts of this and turn it into the e-mails later. It might save some Morse Code puffing!
I have just heard that my paintings and the play – The Book of Judith (http://bookofjudithplay.blogspot.com/) – are going to be exhibited at the Royal Ontario Museum (ROM). I am to be a guest curator. The theme will be my legacy of Inclusion and my growing understanding and message portrayed as art, video and other interactive elements. After a stationary instalment in the museum itself, we will tour both the play and art. This will be in partnership with the Trillium Foundation who are already backing a spring and fall tour of The Book of Judith.
In all it’s a year’s commitment to celebrating Inclusion and diversity.
Michael Rubenfeld and Sarah Garton Stanley are integral to the creation, development, production and presentation of the play. We will be in close collaboration for all of it!
Even the World Peace through Inclusive Transformation will get a leg up as this theme and initiative are very much part of my legacy. Will I finally be able to get research backing for the BMX Model of Inclusion?
Recognition and the opening of doors come in quiet and unassuming ways. Yesterday included a last minute rearrangement of my schedule so I could participate in a teleconference with the ROM. It was no big deal – I am always rearranging my schedule last minute. Staff needed on the spot support to put a last minute proposal in front of the museum’s exhibit selection committee. Today I was in bed, getting ready to get up so the technician could fix the electronics of my bed. The call came and my future shifted.
It’s such an ordinary moment that my emotions haven’t caught up. I get what Mike was saying about meeting with the video game producers on Monday. It’s such an ordinary day, unlike a special day that one has been preparing for - a wedding or graduation - that the obvious next step is to go have lunch. The overall mood is so ordinary, so: “Well, of course – what else would we do except say yes.” In the absence of a big high it nearly feels like a low.
Yet I have been preparing for this day in one way or another since I was four – 57 years. I am coming home to a rightful place in the world. I don’t need a big high right now. I need to place myself firmly in the passion for Inclusion that has carried me through these 57 years. I need to fully feel and express my gratitude for the opening, for the many hands – seen and unseen – that have carried me to this day, and for the vision, energy and courage I have been given to keep on working the path when there was no sign that this future was realizable. Hallelujah!
Michael and I will be at the ROM on Monday for the first production meeting, to find out really what we need to do to set up the contracts, partnerships, etc. Then we will go have a beer. By then I think I will be ready to celebrate!
I have just heard that my paintings and the play – The Book of Judith (http://bookofjudithplay.blogspot.com/) – are going to be exhibited at the Royal Ontario Museum (ROM). I am to be a guest curator. The theme will be my legacy of Inclusion and my growing understanding and message portrayed as art, video and other interactive elements. After a stationary instalment in the museum itself, we will tour both the play and art. This will be in partnership with the Trillium Foundation who are already backing a spring and fall tour of The Book of Judith.
In all it’s a year’s commitment to celebrating Inclusion and diversity.
Michael Rubenfeld and Sarah Garton Stanley are integral to the creation, development, production and presentation of the play. We will be in close collaboration for all of it!
Even the World Peace through Inclusive Transformation will get a leg up as this theme and initiative are very much part of my legacy. Will I finally be able to get research backing for the BMX Model of Inclusion?
Recognition and the opening of doors come in quiet and unassuming ways. Yesterday included a last minute rearrangement of my schedule so I could participate in a teleconference with the ROM. It was no big deal – I am always rearranging my schedule last minute. Staff needed on the spot support to put a last minute proposal in front of the museum’s exhibit selection committee. Today I was in bed, getting ready to get up so the technician could fix the electronics of my bed. The call came and my future shifted.
It’s such an ordinary moment that my emotions haven’t caught up. I get what Mike was saying about meeting with the video game producers on Monday. It’s such an ordinary day, unlike a special day that one has been preparing for - a wedding or graduation - that the obvious next step is to go have lunch. The overall mood is so ordinary, so: “Well, of course – what else would we do except say yes.” In the absence of a big high it nearly feels like a low.
Yet I have been preparing for this day in one way or another since I was four – 57 years. I am coming home to a rightful place in the world. I don’t need a big high right now. I need to place myself firmly in the passion for Inclusion that has carried me through these 57 years. I need to fully feel and express my gratitude for the opening, for the many hands – seen and unseen – that have carried me to this day, and for the vision, energy and courage I have been given to keep on working the path when there was no sign that this future was realizable. Hallelujah!
Michael and I will be at the ROM on Monday for the first production meeting, to find out really what we need to do to set up the contracts, partnerships, etc. Then we will go have a beer. By then I think I will be ready to celebrate!
Tuesday, November 23, 2010
November 23, 2010
I am almost too tired to do this, although it has been a momentous day, more than worth writing about. My mind has dissipated to the level of playing Freecell for an hour, knowing I want to write and that have lots to do and respond to. I am just tired – in a very satisfied and somewhat overwhelmed way.
Sometimes – tonight – I imagine myself when I was 30 or 45 years younger and try to figure out if I could have ever predicted my life as it is now from the perspective of those days. I was with Mike at supper. He is 36 years younger than I am (as I often remind him!) and I was losing myself in a reverie about IF I could have believed then that today COULD even happen.
Some things are clearly enough in a line to have been comprehensible. Four walls, table cloths, stuff like that. But much beyond this mind numbing simplicity and clearly my life has leapt into so many dimensions that the child and young adult Judith had no imagination of. A simple example – I have many ceramics – very beautiful pieces – given to me by the artists who made them, and more than one each! I could not have permitted myself at 25 to imagine that I would have such friends. That I myself would be an artist was certainly not in my purview.
Tonight Mike, his friend Kevin and I presented a potential WPIT project to a class of young students who are learning to design and develop video games. The idea is to create a series of video games that require the players to build inclusive solutions to the games’ problems. Without getting into details (perhaps in the near future!) we were met with focussed interest and enthusiasm. Some twenty students and the teacher signed up to find out more and to start designing and writing the required code.
When I was twenty-five I had spent a summer coding data onto charts printed on legal sized paper so key punch typists could create the cards that fed an apartment-sized computer.
Three professors had at that same time showed off to me their personal computers and proudly demonstrated how to play Pac Man.
I understood Inclusion to mean that I should be fighting for the right to share an apartment with someone who had quadriplegia and with whom I had no particular relationship. In this apartment and ONLY in this apartment I would be able to get six hours a day of personal assistance given to me by someone I did not hire who was trained by someone else to “take care” of me. It was the best I could hope for at 25.
I understood that I was lucky to hope that someday I would be employed by some corporation to do something like HR work. I had been told by knowledgeable professionals that I would not live past thirty and that I would have few if any friends.
Tonight Mike and I were talking about a certain quiet feeling, almost like a let down, that one can have after a very successful event. In this case we are having the kind of experience that hard work, good luck and a really good idea are coming together. In one sense it should be perfectly obvious that such a thing as Inclusive video games can be created. On the other hand I think we both know that this evening and this project could easily go the other way.
I said to Mike that I recognize that quiet feeling as being different from enthusiasm. For me, it is about passion and gratitude. Enthusiasm is a cheap high that easily dissipates when circumstances change or even when it’s just the next morning. Passion is a long term energy and one is very fortunate indeed to be able to live inside the space of one’s own passion.
And this is where gratitude comes in, at least for me. I am deeply moved that my life has been given so many opportunities to extend beyond anything I could or still can imagine. Not only am I someone who gets to do what I love to do; I am also someone who is blessed with unique surprises that take me well beyond the kind of life I would have created for myself if it were all left up to me.
Call it God or call it whatever makes sense to you. My life is clearly in the hands of a power greater than myself and in my opinion that is a very good thing!
Sometimes – tonight – I imagine myself when I was 30 or 45 years younger and try to figure out if I could have ever predicted my life as it is now from the perspective of those days. I was with Mike at supper. He is 36 years younger than I am (as I often remind him!) and I was losing myself in a reverie about IF I could have believed then that today COULD even happen.
Some things are clearly enough in a line to have been comprehensible. Four walls, table cloths, stuff like that. But much beyond this mind numbing simplicity and clearly my life has leapt into so many dimensions that the child and young adult Judith had no imagination of. A simple example – I have many ceramics – very beautiful pieces – given to me by the artists who made them, and more than one each! I could not have permitted myself at 25 to imagine that I would have such friends. That I myself would be an artist was certainly not in my purview.
Tonight Mike, his friend Kevin and I presented a potential WPIT project to a class of young students who are learning to design and develop video games. The idea is to create a series of video games that require the players to build inclusive solutions to the games’ problems. Without getting into details (perhaps in the near future!) we were met with focussed interest and enthusiasm. Some twenty students and the teacher signed up to find out more and to start designing and writing the required code.
When I was twenty-five I had spent a summer coding data onto charts printed on legal sized paper so key punch typists could create the cards that fed an apartment-sized computer.
Three professors had at that same time showed off to me their personal computers and proudly demonstrated how to play Pac Man.
I understood Inclusion to mean that I should be fighting for the right to share an apartment with someone who had quadriplegia and with whom I had no particular relationship. In this apartment and ONLY in this apartment I would be able to get six hours a day of personal assistance given to me by someone I did not hire who was trained by someone else to “take care” of me. It was the best I could hope for at 25.
I understood that I was lucky to hope that someday I would be employed by some corporation to do something like HR work. I had been told by knowledgeable professionals that I would not live past thirty and that I would have few if any friends.
Tonight Mike and I were talking about a certain quiet feeling, almost like a let down, that one can have after a very successful event. In this case we are having the kind of experience that hard work, good luck and a really good idea are coming together. In one sense it should be perfectly obvious that such a thing as Inclusive video games can be created. On the other hand I think we both know that this evening and this project could easily go the other way.
I said to Mike that I recognize that quiet feeling as being different from enthusiasm. For me, it is about passion and gratitude. Enthusiasm is a cheap high that easily dissipates when circumstances change or even when it’s just the next morning. Passion is a long term energy and one is very fortunate indeed to be able to live inside the space of one’s own passion.
And this is where gratitude comes in, at least for me. I am deeply moved that my life has been given so many opportunities to extend beyond anything I could or still can imagine. Not only am I someone who gets to do what I love to do; I am also someone who is blessed with unique surprises that take me well beyond the kind of life I would have created for myself if it were all left up to me.
Call it God or call it whatever makes sense to you. My life is clearly in the hands of a power greater than myself and in my opinion that is a very good thing!
Friday, November 19, 2010
November 19, 2010
As I was checking dates today I realized that I have been writing for more than a continuous month. This will be the 34th posting in this blog. I am “chuffed” as I somewhat expected that I would have missed a day by now, or written less than 2 pages or given it up all together. So far so good for me. I’ve never run out of gas either since owning my first car in 1980 (a yellow Fiat), except for the time that a block of ice severed the fuel line and the gas all ran out in ten minutes –I don’t count that one!
A funny thing happened today… Sometimes the Morphine hits me more than others, especially the evening dose. Tonight I was listening to some Moody Blues in my I-Tunes on my laptop. When Jay was here from Phoenix during our birthdays he left about 22 days worth of music in my folder. I’m not a big listener to music anymore and Jay likes a lot of stuff I don’t it seems, but at supper in bed tonight I found this familiar album from the late ‘60’s.
I realized that the last time I listened to this particular album I was likely stoned too – much more stoned than I am tonight and on a very different, non-prescription drug – but still in a recognizably similar state. Ah, it takes me back!
It felt humourous and good - a recognition and a bridge to a very different yet familiar version of myself. In many ways I am happier now than then, and I NEVER could have imagined today from the perspective of that day. The similarities are there, though. I am still idealistic, searching, self-centred and committed to making a real difference.
My circle meeting was intense last night, leaving Mike and Kimberly put off to some extent. Thank God Gloria was here today. She got sick last night and missed the circle meeting but came today to collage and lunch with me. She has a great connection with Mike and I expect a growing one with Kimberly. We talked together and told many stories about Scott and his supporters, trials and joys of previous trips to Georgia, and of the kind of clashes people have when they care, when they are confronted and when finally they are honest with each other.
Of course both Mike and Kimberly are 25 years old. I am frequently and stereotypically confronted with the depth of their passion, energy, creativity and intelligence and how differently they look upon or simply are unaware of how I, and now my circle, see risks, fatigue, areas that need more careful attention or even some potential directions to take. To me my age shows up most around them. I both want to and don’t want to think and be like them. It seems both wonderful and exhausting.
I guess that it is a blessing that I am not young and they are not old. So far we have been able to work out an amazing variety of ideas and issues. I will do my best to keep it clean and good, not because of either them or me, but because the possibility of World Peace through Inclusion will do so well in their hands.
I am writing this while I am still in bed. Nick and I finally rigged up my laptop and Morse Code so I can use my interface while I am semi lying down. All the pieces that are necessary were in my bedroom. I just didn’t see the last essential part until this afternoon. How often we can’t see what we are looking at!
The collage I did today is about me being reluctant to stick out. Of course I love to have everyone’s attention too. But there is a fear that shows up when I get close to noticing I’m a leader.
After I finished the collage I saw that it has many eyes and points of light in it. It’s hanging over the foot of my bed. I hope I dream about it tonight.
A funny thing happened today… Sometimes the Morphine hits me more than others, especially the evening dose. Tonight I was listening to some Moody Blues in my I-Tunes on my laptop. When Jay was here from Phoenix during our birthdays he left about 22 days worth of music in my folder. I’m not a big listener to music anymore and Jay likes a lot of stuff I don’t it seems, but at supper in bed tonight I found this familiar album from the late ‘60’s.
I realized that the last time I listened to this particular album I was likely stoned too – much more stoned than I am tonight and on a very different, non-prescription drug – but still in a recognizably similar state. Ah, it takes me back!
It felt humourous and good - a recognition and a bridge to a very different yet familiar version of myself. In many ways I am happier now than then, and I NEVER could have imagined today from the perspective of that day. The similarities are there, though. I am still idealistic, searching, self-centred and committed to making a real difference.
My circle meeting was intense last night, leaving Mike and Kimberly put off to some extent. Thank God Gloria was here today. She got sick last night and missed the circle meeting but came today to collage and lunch with me. She has a great connection with Mike and I expect a growing one with Kimberly. We talked together and told many stories about Scott and his supporters, trials and joys of previous trips to Georgia, and of the kind of clashes people have when they care, when they are confronted and when finally they are honest with each other.
Of course both Mike and Kimberly are 25 years old. I am frequently and stereotypically confronted with the depth of their passion, energy, creativity and intelligence and how differently they look upon or simply are unaware of how I, and now my circle, see risks, fatigue, areas that need more careful attention or even some potential directions to take. To me my age shows up most around them. I both want to and don’t want to think and be like them. It seems both wonderful and exhausting.
I guess that it is a blessing that I am not young and they are not old. So far we have been able to work out an amazing variety of ideas and issues. I will do my best to keep it clean and good, not because of either them or me, but because the possibility of World Peace through Inclusion will do so well in their hands.
I am writing this while I am still in bed. Nick and I finally rigged up my laptop and Morse Code so I can use my interface while I am semi lying down. All the pieces that are necessary were in my bedroom. I just didn’t see the last essential part until this afternoon. How often we can’t see what we are looking at!
The collage I did today is about me being reluctant to stick out. Of course I love to have everyone’s attention too. But there is a fear that shows up when I get close to noticing I’m a leader.
After I finished the collage I saw that it has many eyes and points of light in it. It’s hanging over the foot of my bed. I hope I dream about it tonight.
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