It seems fitting to end this tumultuous year by writing about a tumultuous day.
There has been a lot of flu going around so when I developed a wheeze and 1 (and only 1!?!) swollen hand and forearm two days I took steps to increase the amount of non-caffeinated fluids I drink, reduce my sugar and carb intake and increase my time lying down. Of course this is no fun for my personal assistants and means that everyone’s sleep is interrupted.
Well Peter’s increased fatigue level interacted with Helen’s misunderstanding that her desire to not work this evening had NOT been reflected in the schedule meant that 4:30pm arrived with no one confirmed for the shift that started at 5:30pm. A flurry of phone calls and the generousity and flexibility of Mike, Kimberly and Peter and it all worked out.
I started today with the commitment to not be grumpy and several times today the memory of that promise came in handy!
In the end I got today a lot of what I wished for last Saturday. I got to have New Year’s Eve dinner with a personal assistant I love being with, with a family I love being with and to come home to a green Christmas tree made from a rosemary tree that a friend brought me last Tuesday when she learned how much I struggled with the tin can sculpture. Now the home where we had dinner could be accessed only with my ramp, but it wasn’t too steep, and with several burly guys around, felt safe enough. Also, like Cinderella I had to leave early because that was all that Mike and Kimberly could give. In addition my computer would not start this morning but somehow tonight it decided to go on the second try and so I get to come home to blogging and Farmville.
To backtrack, a staff member of the ROM arranged for me and some friends (whom I didn’t really celebrate with at Christmas with because they got flu) to see the Terracotta Warriors exhibit. It was eerie and magnificent – both. I came away with the following impressions:
- I am going to die someday; (a fundamental principle in the Chinese culture of the day was that a well lived life demanded careful preparation for one’s life after death),
- one person can change an entire culture,
- a healthy economy can sustain a lot of waste of resources, and human life and effort,
- the idea that war leads to peace survives massive evidence to the contrary,
- history takes no account of the lived experience of ordinary citizens, and,
- many lasting historic impacts, for better or worse, were made by teenagers,
- the same sort of things have happened everywhere, at one time or another.
In other words it reinforced for me that the world needs a new idea about how to foster and sustain peace and I had better get on with spreading the word about transformation to peace through Inclusion.
So, Happy New Year, and let’s continue to do the work!
Friday, December 31, 2010
Thursday, December 30, 2010
December 30, 2010
Yesterday I wrote for the book and you will, of course, get to read that within the next few months – by May is our intention.
For the last week I have been fundraising with determination. WPIT provides me with lots of opportunities and lots of reasons to get more people involved and find lots of dollars. Right now it’s my most grounded way out of personal poverty.
So tonight I will just share my notes I use in constructing fundraising e-mails. The document they refer to is posted on www.peaceforinclusion.blogspot.com.
To a Canadian potential donor:
We spoke on the phone this morning. You said you would see if some of your friends (10?) would let me contact them about donating to World Peace through Inclusive Transformation.
I believe in and am giving my life to World Peace through Inclusive Transformation - WPIT, www.judithsnow.org. I noticed in 2006 that people become more peaceful when they take the journey to include diversity in their everyday lives. I have attached a document with lots of information, including our latest projects.
The most exciting project is that we are coding a 3-game series of video games where players do better in the game when they include diversity in the group of people who are playing AND reward diversity in the Zombie characters.
The money we raise is used for project development. the coding costs $80,000, and video development costs $7,000.
Money also goes to cover thousands of dollars each year of wages for my personal assistants – money that the government does not cover. This year I must raise $14,000 for this necessary expense alone.
One possible way to donate is to send a cheque to the Family Life Foundation. WPIT gets 85% of your money and you get a charitable receipt. Send the cheque to:
Family Life Foundation
c/o Lindsay King, Director
6 Kings Inn Trail
Thornhill, ON, L3T 1T7
Include in the memo: World Peace through Inclusive Transformation
The other way is to go to www.ppsn.on.ca and click on "Donate". Follow the prompts I get 50% of your donation and YOU get 75% of your donation back as a tax credit when you file your income tax. More information is on their website.
Thank you for your consideration and generousity.
Warmly; Judith
To a potential US donor:
It is awkward to ask for donations, but I believe in and am giving my life to World Peace through Inclusive Transformation - WPIT, www.judithsnow.org. I noticed in 2006 that people become more peaceful when they take the journey to include diversity in their everyday lives. I have attached a document with lots of information, including our latest projects. The most exciting project is that we are coding a 3-game series of video games where players do better in the game by including something that is different about the characters and about other players.
The money we raise is used for project development. It also goes to cover thousands of dollars each year of wages for my personal assistants – money that the government does not cover. This year I must raise $14,000 for this necessary expense alone.
There are two things you can do to make a difference with WPIT, and my ongoing underfunding with my personal assistance.
First, make a list of people you think would be open to listening to a request for money to support my ongoing participation, and ask them if I can contact them. If they say "Yes", give me their contact information. I am attaching a brief about WPIT and its projects.
Secondly, send a check directed to the World Peace through Inclusion Tour to:
First Presbyterian Church of Savannah
c/o Barbara Bishop
520 Washington Avenue
Savannah, GA 31405-2323
Thank you!
(Let me know how much so I can budget, please.)
Warmly and Season’s Greetings; Judith
For the last week I have been fundraising with determination. WPIT provides me with lots of opportunities and lots of reasons to get more people involved and find lots of dollars. Right now it’s my most grounded way out of personal poverty.
So tonight I will just share my notes I use in constructing fundraising e-mails. The document they refer to is posted on www.peaceforinclusion.blogspot.com.
To a Canadian potential donor:
We spoke on the phone this morning. You said you would see if some of your friends (10?) would let me contact them about donating to World Peace through Inclusive Transformation.
I believe in and am giving my life to World Peace through Inclusive Transformation - WPIT, www.judithsnow.org. I noticed in 2006 that people become more peaceful when they take the journey to include diversity in their everyday lives. I have attached a document with lots of information, including our latest projects.
The most exciting project is that we are coding a 3-game series of video games where players do better in the game when they include diversity in the group of people who are playing AND reward diversity in the Zombie characters.
The money we raise is used for project development. the coding costs $80,000, and video development costs $7,000.
Money also goes to cover thousands of dollars each year of wages for my personal assistants – money that the government does not cover. This year I must raise $14,000 for this necessary expense alone.
One possible way to donate is to send a cheque to the Family Life Foundation. WPIT gets 85% of your money and you get a charitable receipt. Send the cheque to:
Family Life Foundation
c/o Lindsay King, Director
6 Kings Inn Trail
Thornhill, ON, L3T 1T7
Include in the memo: World Peace through Inclusive Transformation
The other way is to go to www.ppsn.on.ca and click on "Donate". Follow the prompts I get 50% of your donation and YOU get 75% of your donation back as a tax credit when you file your income tax. More information is on their website.
Thank you for your consideration and generousity.
Warmly; Judith
To a potential US donor:
It is awkward to ask for donations, but I believe in and am giving my life to World Peace through Inclusive Transformation - WPIT, www.judithsnow.org. I noticed in 2006 that people become more peaceful when they take the journey to include diversity in their everyday lives. I have attached a document with lots of information, including our latest projects. The most exciting project is that we are coding a 3-game series of video games where players do better in the game by including something that is different about the characters and about other players.
The money we raise is used for project development. It also goes to cover thousands of dollars each year of wages for my personal assistants – money that the government does not cover. This year I must raise $14,000 for this necessary expense alone.
There are two things you can do to make a difference with WPIT, and my ongoing underfunding with my personal assistance.
First, make a list of people you think would be open to listening to a request for money to support my ongoing participation, and ask them if I can contact them. If they say "Yes", give me their contact information. I am attaching a brief about WPIT and its projects.
Secondly, send a check directed to the World Peace through Inclusion Tour to:
First Presbyterian Church of Savannah
c/o Barbara Bishop
520 Washington Avenue
Savannah, GA 31405-2323
Thank you!
(Let me know how much so I can budget, please.)
Warmly and Season’s Greetings; Judith
Wednesday, December 29, 2010
Tuesday, December 28, 2010
December 28, 2010
Mike has pretty much finished reading through the autobiography section of the 475 pages we assembled last week. Kimberly is reading too, and getting quite into it, as in she is upset about some of it! Interesting! Their reactions reconnect me with my story.
As editor Mike has suggested that I write about the end of Cycle 2 as a bridge into the central location of the book – Cycle 3. Makes sense, and at the same time, it’s a bit intimidating. It might take more than two pages. It might take time and effort.
But it’s TIME – time for this book.
So here goes, Mike!
I became conscious that another cycle had ended or was coming to an end at about the time of my 60th birthday. I am not clear. Recently I have been noticing that my memory for events from the time of returning from the 2008/09 tour – late April 2009 through my hospitalization in Oct. 2010 – is jumbled. I chalk it up to stress, the growing infection in my body and the actual effect of one Cycle passing into another.
The foundation of the concept of my life being in 30 year cycles comes from the belief – powerfully communicated to me when I was six or so - that I certainly could not live past thirty years of age. At about that time I was enrolled in a research study conducted at “Sick Kids” – the Hospital for Sick Kids in Toronto. From that point I was to take two trips every six months into a big city, by car, at a time when such a voyage was strenuous for every person involved – me, my mother and my father.
There are several elements of this pattern that created fundamental perceptions of life for me. The adult Judith has always struggled with the “obvious” conclusions that the child came to in these four trips every year.
First of all, I knew I must be sick. Why so much attention from doctors and big hospital people if I wasn’t sick! Secondly nearly every encounter was bookmarked by intense pain and loneliness, and at the same time a sense of specialness and intimacy. For example, on each of these mornings my father would get me up – something which otherwise my mother always did. He always gave me the special breakfast – boiled egg mashed up on buttered, nearly burnt toast – a breakfast that I looked forward to passionately. Once the appointments were completed my mother always took me for an extra special lunch. She never said anything but it was understood that it was her way of saying that she knew how much these trips were a source of pain and loneliness for me. Finally, the doctors always paid a certain amount of special attention to me and expected me to perform in some entertaining way. For example, they always asked me to tell them a joke on each occasion. I realized at a very early age that this attention set me apart in some way, and so as much as the actual occasions were difficult, I also at some level looked forward to these benchmarks in my otherwise boring life.
And so, the fundamental themes of my life were well established before I was eight. I was special, I was different, I was dying, I was to be treated painfully by every adult who mattered to me, and I had nothing to say about any of it, except to be ready to tell jokes and eat lots of good food. I was very chubby until my 50’s.
(To be continued…)
As editor Mike has suggested that I write about the end of Cycle 2 as a bridge into the central location of the book – Cycle 3. Makes sense, and at the same time, it’s a bit intimidating. It might take more than two pages. It might take time and effort.
But it’s TIME – time for this book.
So here goes, Mike!
I became conscious that another cycle had ended or was coming to an end at about the time of my 60th birthday. I am not clear. Recently I have been noticing that my memory for events from the time of returning from the 2008/09 tour – late April 2009 through my hospitalization in Oct. 2010 – is jumbled. I chalk it up to stress, the growing infection in my body and the actual effect of one Cycle passing into another.
The foundation of the concept of my life being in 30 year cycles comes from the belief – powerfully communicated to me when I was six or so - that I certainly could not live past thirty years of age. At about that time I was enrolled in a research study conducted at “Sick Kids” – the Hospital for Sick Kids in Toronto. From that point I was to take two trips every six months into a big city, by car, at a time when such a voyage was strenuous for every person involved – me, my mother and my father.
There are several elements of this pattern that created fundamental perceptions of life for me. The adult Judith has always struggled with the “obvious” conclusions that the child came to in these four trips every year.
First of all, I knew I must be sick. Why so much attention from doctors and big hospital people if I wasn’t sick! Secondly nearly every encounter was bookmarked by intense pain and loneliness, and at the same time a sense of specialness and intimacy. For example, on each of these mornings my father would get me up – something which otherwise my mother always did. He always gave me the special breakfast – boiled egg mashed up on buttered, nearly burnt toast – a breakfast that I looked forward to passionately. Once the appointments were completed my mother always took me for an extra special lunch. She never said anything but it was understood that it was her way of saying that she knew how much these trips were a source of pain and loneliness for me. Finally, the doctors always paid a certain amount of special attention to me and expected me to perform in some entertaining way. For example, they always asked me to tell them a joke on each occasion. I realized at a very early age that this attention set me apart in some way, and so as much as the actual occasions were difficult, I also at some level looked forward to these benchmarks in my otherwise boring life.
And so, the fundamental themes of my life were well established before I was eight. I was special, I was different, I was dying, I was to be treated painfully by every adult who mattered to me, and I had nothing to say about any of it, except to be ready to tell jokes and eat lots of good food. I was very chubby until my 50’s.
(To be continued…)
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!
Tuesday, December 21, 2010
Signing Off
Alas, I am breaking the chain tonight.
I have a great opportunity to put together two books - one autobiographic and one theoretical. It will require extensive work in the next month or so. I am going for it!
Merry Christmas, and a Happy and Prosperous 2011!
Warmly; Judith
I have a great opportunity to put together two books - one autobiographic and one theoretical. It will require extensive work in the next month or so. I am going for it!
Merry Christmas, and a Happy and Prosperous 2011!
Warmly; Judith
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.
Sunday, December 19, 2010
December 19, 2010
I wrote my second draft for the ROM tonight. I now feel free to share the first one. We are pushed back to mid-June or early July, for very good reasons. More soon!
Exhibit Overview – the Legacy of Judith
Preliminary Thoughts
This - Draft 1 - is written by Judith Snow. It is clear to me at this moment that I cannot fairly represent The Book of Judith since Michael Rubenfeld, Sarah Garton Stanley and I have not worked together since the ROM hosted the preliminary meeting on Nov. 29.
I have only a superficial understanding of the needs, structures and processes of the ROM. As such I anticipate that this – the first kick at the can – is off base and I am requesting lots of constructive feedback and an opportunity to meet key players in the near future.
I have spoken at length with nine individuals who come from a variety of communities in my life, such as a Vice President of Spinmaster, which is a toy company, who advised me about interactive toys.
Dreams, Hopes, Must Haves
I am starting at my dream because dreaming is always a powerful place to start!
I want the people who design, build, tour and enjoy this exhibit 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.
My art, and the play The Book of Judith, are aspects of my legacy of building Inclusion internationally. This is what the ROM knows about me so this is what we talked about on Nov. 29. However, my paintings and the play are not a complete representation of what it means to be Judith Snow. Therefore I have been imagining an interactive exhibit that says more than these can say in themselves.
I have many long term partners and relationships with whom I want to share this voice. The ROM is primary because they own and have opened the opportunity, and because there is a longer term potential through the Programming functions at ROM to continue to foster understanding and practise of Inclusion. Secondly, the Book of Judith and I are essentially one in this, though it remains to be created how the tour of the play intersects with the tour of the exhibit.
Laser Eagles Art Guild, the Marsha Forest Centre, the Atkinson Charitable Foundation, World Peace through Inclusive Transformation and the City Team of the Toronto Wisdom Unlimited program are all integrated in my journey toward “being” Inclusion. This exhibit is my chance to shine AND to celebrate my community, relationships, collaboration and partnerships. To me they are central to my life and legacy.
While this work can’t be only about ME and my art, at the same time the design of the exhibit can and must integrate these relationships without confusion of the message, distraction from the art and the play, or encumbrances that would make the exhibit unworkable as a touring or stationary unit.
My “must haves” are:
It will be joyful and uplifting to do this - for me and others;
I am partnered with and taught what I need to know to fully participate;
The stationary and touring products represent Inclusion as I understand it;
The exhibit has an interactive component, and the exhibitors work with me to ensure that this aspect is sustained when I am not present to do so; and,
Costs are covered and there is sufficient recompense as to not make my participation a financial burden to me.
The “would love it if” aspects are:
I would like a book to get written, published, to sell well and to launch my ideas through related videos and other media.
I would like to get a teaching venue out of this where I have real control over the teacher, student, content dynamic.
I don’t expect the ROM to promise these, but the exposure and “the resume” are priceless to me! I am asking only that people are aware that these are important to me and to steer in directions that make these results likely.
Limitations, Barriers and Challenges
Inclusion necessarily is a challenge to the status quo in some way. This means there will always be “issues” when we are beginning the effort to be inclusive. I began my thinking about the exhibit itself by “noticing” what came up for me as issues.
The exhibit room is roughly 20 feet by 24 with three doorways and one “lopped off” corner giving effectively 7 discreet display areas of varying size. In addition there is a display panel in the middle of the room that runs on a diagonal and is approximately 9 by 2 by 7 feet high, and from which can be hung paintings, posters, video screens and similar objects. The walls are white, smooth and likely painted. The ceiling is perhaps 20 feet high or more and both inaccessible and not uniform in construction. The floor is smooth and not carpeted. There is no seating of any kind. There is abundant track lighting aimed at the walls and central display panel, making the room bright and very suitable as an art gallery.
The room is essentially a thoroughfare for visitors and staff moving from the Rotunda core or the elevators to the dinosaur exhibit and service areas. When we were being shown the room I observed a continuous low flow of traffic – everything from guests to garbage disposal units moved on through! The challenge is to entice visitors to step out of the flow and spend some time – maybe time that they had allocated for other exhibits – dipping into and dallying with Inclusion.
Other limitations – not necessarily BARRIERS – are that:
Floor space to move around in, after the “stuff” is placed, is not ample;
People who do not easily stand for more than a few minutes have no place to rest;
There is no apparent expectation that the exhibit will cater to children, those who lie down or those with unusual sensitivities or interests in light or sound; and,
Sharing the experience of play or interaction in general is NOT encouraged as there is an ongoing need to prevent vandalism in this and other exhibits.
Concepts for the Exhibit
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.
In my current conceptualization 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 there will also be enticements to step aside and stay awhile, learn something and enjoy the experience.
In addition, the room will be conceptually divided into three layers. The middle layer will be for language based communications, 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 South Wall, really 3 short walls connected like a bay window between the main entrance and exit, will be reserved for statements about barriers. For example I will hang my first framed painting, “Vulnerability”, 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 Galati and Irena Kagansky. 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.
Floor to 3 1/2 feet
The concept is to appeal to children and others who are unlikely to be interested in language driven information. Spinmaster will donate four Aquadoodles. These devices allow drawing, finger and hand prints, and written messages. The message slowly disappears in a few minutes. We can arrange a camera that takes a picture of the design/message, to preserve it and project the growing collection of messages in a slowly moving pattern on the walls and perhaps on hung-from-ceiling panels.
Colourful, abstract paintings will also be hung in this area, perhaps six of mine and another six from Laser Eagle artists, featuring Felicia Galati. They will be unframed canvas boards, solidly attached to the wall and covered with a material like Plexiglas that can be easily cleaned off.
Six feet up…
The Marsha Forest Centre will collaborate to refurbish and/or redesign some of my PATH’s and other graphically designed depictions on newsprint, typically banners that are 8 by 3 ½ feet. The themes will indicate movement from early to later understandings of Inclusion. The newsprint will be “fixed” and can be mounted so as to be moved for the tour.
These will intermingle with the preserved drawings and messages from the Aquadoodles.
3 ½ feet to six
(Please note: exact dimensions of paintings will follow as soon as the basic design is agreed on.)
“Dead Space” of the South Wall:
“My Community” – acrylic on canvas, not framed, approx. 4 by 2 1/2 by 2 inches, accompanied by text about my being ejected from the organization that I started to flow individualized funding to coop members who need personal assistance;
photos of Irene Kagansky in the Book of Judith choir, text from my blog entry about her, and a display of one of her poems;
“Vulnerability” – acrylic on newsprint, framed and glazed, 29 in by 23 in by 1 in, on the South/West wall adjacent to exit, with text about being told I’m not an artist.
East Wall
This area will be used for an extensive exploration of the Laser Eagles Art Guild, including:
video on tracking and tracker training
about 4 framed paintings (dimensions to follow shortly)
photographs of artists at work
statements from the Etobicoke Art Gallery where our work has been displayed an exhibition of Felicia Galati’s work, pictures of her painting and an article that I wrote for the Centennial Flame project acknowledging her gifts (English, French, Text & Audio)
an area for me or other Laser Eagle artists to demonstrate how we paint. This area will not be continuously be used of course and so at other times paintings on easels can be left on display and cordoned off for security purposes.
North Wall – larger area
This will be the People area. It will be organized in sections relative to the important communities of my life.
The area for the Wisdom City Team will include a painting called “Boats”, which is acrylic on canvas, and needs to be framed. It will also include a video slide presentation of people assisting me to climb a rock wall on a cruise ship. The short article that I wrote about this called “Shoes” will be displayed in such a way that it can be read or listened to. Likely other artifacts, collages and text relative to participation will be displayed, (I’m making it up here guys!)
Similar displays will be created with a painting, text and video for other communities as mentioned in the beginning of this document.
In addition to being organized by communities, we will use a “path” that is painted on the wall to demonstrate how my art has progressed from 1984 to now. I will use 4 or 5 unframed paintings, (these may be framed by the ROM if this is their preference). I will also use quotes and text to demonstrate shifts in my thinking about Inclusion.
Following a progression, everything about the Book of Judith play will be around the doorway which is in the west side of the North Wall.
North Wall – smaller area, and West Wall
This area will be used to demonstrate Resources. I will work with Motion Specialties to have a puff and sip, and a touch plate system available for show, and video demonstrating how people drive their wheelchairs and type on computers with these systems. We will also provide video of artists painting using the lasers, and when a Laser Eagle artist is present we will provide lasers for people to attempt tracking themselves.
Central Display Panel
This will be used on both sides for video, text and perhaps 4 paintings (framed) to demonstrate the importance of dreaming.
I have a large 10” diameter Dreamcatcher made by a young aboriginal man with autism. I will display pictures of him creating the Dreamcatcher. This artefact needs to be repaired and cleaned, and hung high enough to not be vulnerable to passersby.
Questions…
Insurable value??? How does that get calculated?
How to represent “Place”??
I’m sure there are many others!
Conclusion
Once again, thank you for this opportunity and please provide extensive feedback so that I may quickly get to work on creating and finding the resources and artefacts that will make this exhibit extraordinary.
Exhibit Overview – the Legacy of Judith
Preliminary Thoughts
This - Draft 1 - is written by Judith Snow. It is clear to me at this moment that I cannot fairly represent The Book of Judith since Michael Rubenfeld, Sarah Garton Stanley and I have not worked together since the ROM hosted the preliminary meeting on Nov. 29.
I have only a superficial understanding of the needs, structures and processes of the ROM. As such I anticipate that this – the first kick at the can – is off base and I am requesting lots of constructive feedback and an opportunity to meet key players in the near future.
I have spoken at length with nine individuals who come from a variety of communities in my life, such as a Vice President of Spinmaster, which is a toy company, who advised me about interactive toys.
Dreams, Hopes, Must Haves
I am starting at my dream because dreaming is always a powerful place to start!
I want the people who design, build, tour and enjoy this exhibit 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.
My art, and the play The Book of Judith, are aspects of my legacy of building Inclusion internationally. This is what the ROM knows about me so this is what we talked about on Nov. 29. However, my paintings and the play are not a complete representation of what it means to be Judith Snow. Therefore I have been imagining an interactive exhibit that says more than these can say in themselves.
I have many long term partners and relationships with whom I want to share this voice. The ROM is primary because they own and have opened the opportunity, and because there is a longer term potential through the Programming functions at ROM to continue to foster understanding and practise of Inclusion. Secondly, the Book of Judith and I are essentially one in this, though it remains to be created how the tour of the play intersects with the tour of the exhibit.
Laser Eagles Art Guild, the Marsha Forest Centre, the Atkinson Charitable Foundation, World Peace through Inclusive Transformation and the City Team of the Toronto Wisdom Unlimited program are all integrated in my journey toward “being” Inclusion. This exhibit is my chance to shine AND to celebrate my community, relationships, collaboration and partnerships. To me they are central to my life and legacy.
While this work can’t be only about ME and my art, at the same time the design of the exhibit can and must integrate these relationships without confusion of the message, distraction from the art and the play, or encumbrances that would make the exhibit unworkable as a touring or stationary unit.
My “must haves” are:
It will be joyful and uplifting to do this - for me and others;
I am partnered with and taught what I need to know to fully participate;
The stationary and touring products represent Inclusion as I understand it;
The exhibit has an interactive component, and the exhibitors work with me to ensure that this aspect is sustained when I am not present to do so; and,
Costs are covered and there is sufficient recompense as to not make my participation a financial burden to me.
The “would love it if” aspects are:
I would like a book to get written, published, to sell well and to launch my ideas through related videos and other media.
I would like to get a teaching venue out of this where I have real control over the teacher, student, content dynamic.
I don’t expect the ROM to promise these, but the exposure and “the resume” are priceless to me! I am asking only that people are aware that these are important to me and to steer in directions that make these results likely.
Limitations, Barriers and Challenges
Inclusion necessarily is a challenge to the status quo in some way. This means there will always be “issues” when we are beginning the effort to be inclusive. I began my thinking about the exhibit itself by “noticing” what came up for me as issues.
The exhibit room is roughly 20 feet by 24 with three doorways and one “lopped off” corner giving effectively 7 discreet display areas of varying size. In addition there is a display panel in the middle of the room that runs on a diagonal and is approximately 9 by 2 by 7 feet high, and from which can be hung paintings, posters, video screens and similar objects. The walls are white, smooth and likely painted. The ceiling is perhaps 20 feet high or more and both inaccessible and not uniform in construction. The floor is smooth and not carpeted. There is no seating of any kind. There is abundant track lighting aimed at the walls and central display panel, making the room bright and very suitable as an art gallery.
The room is essentially a thoroughfare for visitors and staff moving from the Rotunda core or the elevators to the dinosaur exhibit and service areas. When we were being shown the room I observed a continuous low flow of traffic – everything from guests to garbage disposal units moved on through! The challenge is to entice visitors to step out of the flow and spend some time – maybe time that they had allocated for other exhibits – dipping into and dallying with Inclusion.
Other limitations – not necessarily BARRIERS – are that:
Floor space to move around in, after the “stuff” is placed, is not ample;
People who do not easily stand for more than a few minutes have no place to rest;
There is no apparent expectation that the exhibit will cater to children, those who lie down or those with unusual sensitivities or interests in light or sound; and,
Sharing the experience of play or interaction in general is NOT encouraged as there is an ongoing need to prevent vandalism in this and other exhibits.
Concepts for the Exhibit
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.
In my current conceptualization 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 there will also be enticements to step aside and stay awhile, learn something and enjoy the experience.
In addition, the room will be conceptually divided into three layers. The middle layer will be for language based communications, 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 South Wall, really 3 short walls connected like a bay window between the main entrance and exit, will be reserved for statements about barriers. For example I will hang my first framed painting, “Vulnerability”, 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 Galati and Irena Kagansky. 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.
Floor to 3 1/2 feet
The concept is to appeal to children and others who are unlikely to be interested in language driven information. Spinmaster will donate four Aquadoodles. These devices allow drawing, finger and hand prints, and written messages. The message slowly disappears in a few minutes. We can arrange a camera that takes a picture of the design/message, to preserve it and project the growing collection of messages in a slowly moving pattern on the walls and perhaps on hung-from-ceiling panels.
Colourful, abstract paintings will also be hung in this area, perhaps six of mine and another six from Laser Eagle artists, featuring Felicia Galati. They will be unframed canvas boards, solidly attached to the wall and covered with a material like Plexiglas that can be easily cleaned off.
Six feet up…
The Marsha Forest Centre will collaborate to refurbish and/or redesign some of my PATH’s and other graphically designed depictions on newsprint, typically banners that are 8 by 3 ½ feet. The themes will indicate movement from early to later understandings of Inclusion. The newsprint will be “fixed” and can be mounted so as to be moved for the tour.
These will intermingle with the preserved drawings and messages from the Aquadoodles.
3 ½ feet to six
(Please note: exact dimensions of paintings will follow as soon as the basic design is agreed on.)
“Dead Space” of the South Wall:
“My Community” – acrylic on canvas, not framed, approx. 4 by 2 1/2 by 2 inches, accompanied by text about my being ejected from the organization that I started to flow individualized funding to coop members who need personal assistance;
photos of Irene Kagansky in the Book of Judith choir, text from my blog entry about her, and a display of one of her poems;
“Vulnerability” – acrylic on newsprint, framed and glazed, 29 in by 23 in by 1 in, on the South/West wall adjacent to exit, with text about being told I’m not an artist.
East Wall
This area will be used for an extensive exploration of the Laser Eagles Art Guild, including:
video on tracking and tracker training
about 4 framed paintings (dimensions to follow shortly)
photographs of artists at work
statements from the Etobicoke Art Gallery where our work has been displayed an exhibition of Felicia Galati’s work, pictures of her painting and an article that I wrote for the Centennial Flame project acknowledging her gifts (English, French, Text & Audio)
an area for me or other Laser Eagle artists to demonstrate how we paint. This area will not be continuously be used of course and so at other times paintings on easels can be left on display and cordoned off for security purposes.
North Wall – larger area
This will be the People area. It will be organized in sections relative to the important communities of my life.
The area for the Wisdom City Team will include a painting called “Boats”, which is acrylic on canvas, and needs to be framed. It will also include a video slide presentation of people assisting me to climb a rock wall on a cruise ship. The short article that I wrote about this called “Shoes” will be displayed in such a way that it can be read or listened to. Likely other artifacts, collages and text relative to participation will be displayed, (I’m making it up here guys!)
Similar displays will be created with a painting, text and video for other communities as mentioned in the beginning of this document.
In addition to being organized by communities, we will use a “path” that is painted on the wall to demonstrate how my art has progressed from 1984 to now. I will use 4 or 5 unframed paintings, (these may be framed by the ROM if this is their preference). I will also use quotes and text to demonstrate shifts in my thinking about Inclusion.
Following a progression, everything about the Book of Judith play will be around the doorway which is in the west side of the North Wall.
North Wall – smaller area, and West Wall
This area will be used to demonstrate Resources. I will work with Motion Specialties to have a puff and sip, and a touch plate system available for show, and video demonstrating how people drive their wheelchairs and type on computers with these systems. We will also provide video of artists painting using the lasers, and when a Laser Eagle artist is present we will provide lasers for people to attempt tracking themselves.
Central Display Panel
This will be used on both sides for video, text and perhaps 4 paintings (framed) to demonstrate the importance of dreaming.
I have a large 10” diameter Dreamcatcher made by a young aboriginal man with autism. I will display pictures of him creating the Dreamcatcher. This artefact needs to be repaired and cleaned, and hung high enough to not be vulnerable to passersby.
Questions…
Insurable value??? How does that get calculated?
How to represent “Place”??
I’m sure there are many others!
Conclusion
Once again, thank you for this opportunity and please provide extensive feedback so that I may quickly get to work on creating and finding the resources and artefacts that will make this exhibit extraordinary.
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?
Friday, December 17, 2010
December 17, 2010
I made $375 today. Tomorrow I will make $500.
I hope I have made enough to offset the cost of fixing the flat tire I discovered as I set out tonight to shop for Christmas!
As I lay awake this morning before Helen came to get me up I watched in the early dawn light while the crane by the “boxes” inside the railway yard fence drew up its cable. I watched for a few more minutes but it did not move again. The boxes had been rearranged a little overnight and there are new gaps between them. Beyond these alterations, and that the crane is facing the opposite way from yesterday, there is no change in the goings on of the marshalling yard.
I wondered – again – what is going on that must mainly happen at night.
Soon after I got up I counted the construction cranes visible to me from my bedroom window. There are six. Each one is distinct from the others in size, shape and colour.
Nearly always they stand motionless. One in particular has a motion of bobbing like a long-necked bird dropping its beak into a stream for fish. It has stood “beak down” for a few days now, looking very weird indeed. Together, when they stand still all day, they remind me of the dinosaur exhibit at the ROM.
Since I was in a counting mood I counted the different types of rail car visible in the yard. Again six. The large double decker orange/white/yellow passenger car belongs to a train called “Rocky Mountaineer”. (I drove closer mid-morning to read the indistinct words.) The remainder of its cars are black and white. This giant train has been here, motionless, for about a week.
Eighty percent of the cars on or moving through the yard are “Go Train” vehicles. These double decker conveyances are big, but not nearly as tall as the three or four cars of “Rocky”. The seven “Go Train” engine cars that are lined up in a flying wedge formation have not moved for about a week either!
The single story passenger cars of the “Via Rail” seem miniscule in comparison. However, they don’t hang around!
The rest of the train cars are flat beds – part of a freight train. Occasionally one will see the other sorts of freight car, but not today.
It is something of a mystery to me that so much valuable stuff – gigantic construction cranes, passenger cars, each with the capacity of a movie theatre, huge prefab buildings, sleek and fast engines – can sit idle for such long time periods. Certainly we are given to believe that the economy is run as efficiently as possible and that there’s an elaborate plan behind it all. But from the vantage point of my bedroom window I have a very different impression.
Have I stumbled across a train set that has been abandoned while some bored child of a giant takes an afternoon’s nap? Why does this huge child play only at night, or is it his father who secretly moves the blocks, cars and cranes around while his son sleeps?
I can only exercise my imagination – likely I will never know what is behind this great idleness. However, I am very pleased that I am a spectator to it all.
I hope I have made enough to offset the cost of fixing the flat tire I discovered as I set out tonight to shop for Christmas!
As I lay awake this morning before Helen came to get me up I watched in the early dawn light while the crane by the “boxes” inside the railway yard fence drew up its cable. I watched for a few more minutes but it did not move again. The boxes had been rearranged a little overnight and there are new gaps between them. Beyond these alterations, and that the crane is facing the opposite way from yesterday, there is no change in the goings on of the marshalling yard.
I wondered – again – what is going on that must mainly happen at night.
Soon after I got up I counted the construction cranes visible to me from my bedroom window. There are six. Each one is distinct from the others in size, shape and colour.
Nearly always they stand motionless. One in particular has a motion of bobbing like a long-necked bird dropping its beak into a stream for fish. It has stood “beak down” for a few days now, looking very weird indeed. Together, when they stand still all day, they remind me of the dinosaur exhibit at the ROM.
Since I was in a counting mood I counted the different types of rail car visible in the yard. Again six. The large double decker orange/white/yellow passenger car belongs to a train called “Rocky Mountaineer”. (I drove closer mid-morning to read the indistinct words.) The remainder of its cars are black and white. This giant train has been here, motionless, for about a week.
Eighty percent of the cars on or moving through the yard are “Go Train” vehicles. These double decker conveyances are big, but not nearly as tall as the three or four cars of “Rocky”. The seven “Go Train” engine cars that are lined up in a flying wedge formation have not moved for about a week either!
The single story passenger cars of the “Via Rail” seem miniscule in comparison. However, they don’t hang around!
The rest of the train cars are flat beds – part of a freight train. Occasionally one will see the other sorts of freight car, but not today.
It is something of a mystery to me that so much valuable stuff – gigantic construction cranes, passenger cars, each with the capacity of a movie theatre, huge prefab buildings, sleek and fast engines – can sit idle for such long time periods. Certainly we are given to believe that the economy is run as efficiently as possible and that there’s an elaborate plan behind it all. But from the vantage point of my bedroom window I have a very different impression.
Have I stumbled across a train set that has been abandoned while some bored child of a giant takes an afternoon’s nap? Why does this huge child play only at night, or is it his father who secretly moves the blocks, cars and cranes around while his son sleeps?
I can only exercise my imagination – likely I will never know what is behind this great idleness. However, I am very pleased that I am a spectator to it all.
Thursday, December 16, 2010
December 16, 2010
Sunday, Wednesday and tonight I spent considerable time with a child. It makes me appreciate SO much that I don’t have one.
He likes me, though, and I like him. Regardless I’m not set up for it in my living space or psychologically. It gives me new understanding why other people who use personal assistance have worked hard to create a particular type of support to help them raise children. Without that it’s a real challenge to get the kid to keep his sticky fingers off the keyboard while his incompatible “educational” game is threatening to melt down my operating system.
It seems like I have spent a lot of time and energy lately trying to reassert control – “my boundaries” as they say now. I noticed recently that I have greatly increased my patrolling – frequent trips through the apartment to ensure that things have been put away where they belong, room has been left on the floor to permit free passage of my wheelchair, Peter’s stuff is in Peter’s spaces, table tops are cleared of things whose purpose is incompatible with the function of the table – even regularly counting what’s left of the eggs, toilet paper rolls, tissue boxes, etc. In such ways I have become my Mother.
Part of this is because with Peter here, four other personal assistants coming weekly, a great deal of WPIT and Laser Eagles planning going on in the space and now intentionally offering hospitality to neighbours – including an eleven year old boy – everyone’s needs for safety, storage, secure work space, etc. must be met. Those needs may exist for an hour or for months. Once again, I have gotten fairly good at understanding and accommodating the requirements of my assistants. Adding a housemate and a half-a-dozen neighbours created a different dynamic that invites stress and chaos.
Another factor behind my increased control freakiness belongs squarely to the “Third Cycle”. Since it’s clear that I will live and I have a passion to get back in the game of inclusion, I must vastly increase my resources. I have about a $15,000/year shortfall in paying my personal assistants. I have large living costs. Lots of things cost double because of been accompanied – bus fare, meals, hotel rooms, rent. Most importantly the research and project development needs for WPIT will be/are significant.
I used to be very good at making money, especially when Marsha was around to remind me to keep at it and to promote me. Then I got slack. As the end of Cycle 2 crept up on me I grew content to live the life of a very poor person,
But Cycle 3 is now very much underway and I must leave the ODSP world soon – perhaps February. My intentions are set on a functioning Judith Snow/World Peace through Inclusion Foundation with assets not less than $6 million by the end of 2011!
I am learning again how to make money. I am getting coaching. I am seeing how I got stuck in lots of side tracks, from not wanting to lose my connection with vulnerable people to enjoying hanging out with the stories of how hard it is and in enjoying too much the dreaming of what we could do next.
What works is to take the action that reliably brings in the money. I set a goal of making $500 a day, five days a week. Yesterday I made $550. Today I made $100. Tomorrow I will make $500.
He likes me, though, and I like him. Regardless I’m not set up for it in my living space or psychologically. It gives me new understanding why other people who use personal assistance have worked hard to create a particular type of support to help them raise children. Without that it’s a real challenge to get the kid to keep his sticky fingers off the keyboard while his incompatible “educational” game is threatening to melt down my operating system.
It seems like I have spent a lot of time and energy lately trying to reassert control – “my boundaries” as they say now. I noticed recently that I have greatly increased my patrolling – frequent trips through the apartment to ensure that things have been put away where they belong, room has been left on the floor to permit free passage of my wheelchair, Peter’s stuff is in Peter’s spaces, table tops are cleared of things whose purpose is incompatible with the function of the table – even regularly counting what’s left of the eggs, toilet paper rolls, tissue boxes, etc. In such ways I have become my Mother.
Part of this is because with Peter here, four other personal assistants coming weekly, a great deal of WPIT and Laser Eagles planning going on in the space and now intentionally offering hospitality to neighbours – including an eleven year old boy – everyone’s needs for safety, storage, secure work space, etc. must be met. Those needs may exist for an hour or for months. Once again, I have gotten fairly good at understanding and accommodating the requirements of my assistants. Adding a housemate and a half-a-dozen neighbours created a different dynamic that invites stress and chaos.
Another factor behind my increased control freakiness belongs squarely to the “Third Cycle”. Since it’s clear that I will live and I have a passion to get back in the game of inclusion, I must vastly increase my resources. I have about a $15,000/year shortfall in paying my personal assistants. I have large living costs. Lots of things cost double because of been accompanied – bus fare, meals, hotel rooms, rent. Most importantly the research and project development needs for WPIT will be/are significant.
I used to be very good at making money, especially when Marsha was around to remind me to keep at it and to promote me. Then I got slack. As the end of Cycle 2 crept up on me I grew content to live the life of a very poor person,
But Cycle 3 is now very much underway and I must leave the ODSP world soon – perhaps February. My intentions are set on a functioning Judith Snow/World Peace through Inclusion Foundation with assets not less than $6 million by the end of 2011!
I am learning again how to make money. I am getting coaching. I am seeing how I got stuck in lots of side tracks, from not wanting to lose my connection with vulnerable people to enjoying hanging out with the stories of how hard it is and in enjoying too much the dreaming of what we could do next.
What works is to take the action that reliably brings in the money. I set a goal of making $500 a day, five days a week. Yesterday I made $550. Today I made $100. Tomorrow I will make $500.
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!
Monday, December 13, 2010
December 13, 2010
Those who know me well will recall that my apartment is exceptional in that it is designed to wrap around a stairwell. This gives me two south facing windows from which I can see several parks and Lake Ontario. I also get a north facing window from which I can see two highways, abandoned industrial land, a dozen or more train tracks, parts of three housing coops, several streets and two buildings under construction.
Now you may well imagine that I and my various visitors spend as much time as possible looking at the gorgeous waterfront vista. Not! Almost to a person folks admire the south view for about thirty seconds, walk through to my bedroom, lean on my bed (it’s set to its highest position) and start pointing out the curious things they see – from joggers proceeding along the lonely stretch of road beside the abandoned fields to planes landing at the Lester B. Pearson Airport more than fifteen miles away to massive construction cranes in motion putting up high rise condos.
I am reminded again and again that humans love to watch. My north bedroom is replete with watchable entertainment, and – better than TV – it’s all real.
When I moved in 15 months ago I somewhat reluctantly chose the north facing bedroom because it is much closer to the bathroom and gives my assistants more privacy with the activities around my personal care. With some awkwardness we placed my bed right under the window so I could look out during those frequent hours when I am not sleeping. I knew the first night here that I had made one of the best decisions of my life in coming to the Robert Cooke Housing Coop and in taking the north bedroom.
Night or day there is always something going on. For three days this weekend there were seven GO trains, stationary side-by-side, positioned one car ahead of the next. GO trains are green and white, and the engine car has a flying wing design. The seven side by side but spread out so all were visible at once was quite a sight. I imagine it was done to take advertising photographs!
About three weeks ago I began to notice that the area between the train tracks and North Toronto Street had about half a dozen curious boxy structures, two windows each, seemingly dropped down helter skelter. Of course for a few days I wasn’t sure if they really were newly arrived, or if I simply hadn’t noticed them before. By the third or fourth day it was clear each morning that there were a few more than had been there the night before.
Then began to arrive different boxes, similar but with clear differences. About a dozen are slightly larger and a somewhat darker, more greyish hue. Another dozen have doors as well as two windows.
For a few nights last week something projected an intense light - bright enough to make me squint - and I had to cover part of my window and give up some of my view so I could sleep! The light would come on around 11:00pm and was gone by 6:00am. Now it’s gone. Also the forty or so boxes are neatly stacked in two layers and in straight rows instead of scattered about.
What are they building so close to the train tracks? Do they intend to lift each box over the road into the abandoned field? Will this be an industrial condo or rental prefab? Is this merely a way station, and someday soon I will awaken at 4:00am to dimly view a train made up of flatbed cars being loaded to take this nascent building away?
Of course I could do some research, probably quite easily, and get answers. I could have stepped back into the advocate role and complained to my City Councillor about the night light disturbance. But I didn’t and I don’t.
I am simply loving to watch.
Now you may well imagine that I and my various visitors spend as much time as possible looking at the gorgeous waterfront vista. Not! Almost to a person folks admire the south view for about thirty seconds, walk through to my bedroom, lean on my bed (it’s set to its highest position) and start pointing out the curious things they see – from joggers proceeding along the lonely stretch of road beside the abandoned fields to planes landing at the Lester B. Pearson Airport more than fifteen miles away to massive construction cranes in motion putting up high rise condos.
I am reminded again and again that humans love to watch. My north bedroom is replete with watchable entertainment, and – better than TV – it’s all real.
When I moved in 15 months ago I somewhat reluctantly chose the north facing bedroom because it is much closer to the bathroom and gives my assistants more privacy with the activities around my personal care. With some awkwardness we placed my bed right under the window so I could look out during those frequent hours when I am not sleeping. I knew the first night here that I had made one of the best decisions of my life in coming to the Robert Cooke Housing Coop and in taking the north bedroom.
Night or day there is always something going on. For three days this weekend there were seven GO trains, stationary side-by-side, positioned one car ahead of the next. GO trains are green and white, and the engine car has a flying wing design. The seven side by side but spread out so all were visible at once was quite a sight. I imagine it was done to take advertising photographs!
About three weeks ago I began to notice that the area between the train tracks and North Toronto Street had about half a dozen curious boxy structures, two windows each, seemingly dropped down helter skelter. Of course for a few days I wasn’t sure if they really were newly arrived, or if I simply hadn’t noticed them before. By the third or fourth day it was clear each morning that there were a few more than had been there the night before.
Then began to arrive different boxes, similar but with clear differences. About a dozen are slightly larger and a somewhat darker, more greyish hue. Another dozen have doors as well as two windows.
For a few nights last week something projected an intense light - bright enough to make me squint - and I had to cover part of my window and give up some of my view so I could sleep! The light would come on around 11:00pm and was gone by 6:00am. Now it’s gone. Also the forty or so boxes are neatly stacked in two layers and in straight rows instead of scattered about.
What are they building so close to the train tracks? Do they intend to lift each box over the road into the abandoned field? Will this be an industrial condo or rental prefab? Is this merely a way station, and someday soon I will awaken at 4:00am to dimly view a train made up of flatbed cars being loaded to take this nascent building away?
Of course I could do some research, probably quite easily, and get answers. I could have stepped back into the advocate role and complained to my City Councillor about the night light disturbance. But I didn’t and I don’t.
I am simply loving to watch.
Sunday, December 12, 2010
December 12, 2010
It’s really beginning to look a lot like Christmas. (I said that already – yesterday!)
It’s been a long time since I shared my “household” with another person, outside of the ongoing presence of personal assistants. Over years of funny and difficult events I have become relatively good at creating the physical, emotional and social space that my assistants need to feel centred in my home and car. Having a continuous need to maintain a workplace within the intimate spaces of my life is a delicate balancing act, and one that I enjoy ongoingly paying attention to. This endeavour quite literally engages a large piece of my emotional availability and is a fulfilling pleasure for me.
Having a housemate is another thing! I realized in the wee hours of this morning that Peter is on some sort of emotional/spiritual journey right now that requires this space to be nurturing and open in ways that I am not familiar with. In other words the control freak in me is getting triggered.
I was once married and I imagine that I might like this sort of intimacy again. Right now I am getting to see why I’m not in that sort of relationship!
The space that assistants need can be bounded by me in ways that are perceived by everyone as legitimate. My supporters, paid and unpaid, agree with me that the fundamental reason for their presence in my life is to ensure that I can both live and participate in ways that work for me. There are endless negotiations and at the root of them is always this center – my life and my participation. This certainty gives a way to find articulation and direction.
Peter is here only in part as a personal assistant. He is also here as a colleague in the community development work of World Peace through Inclusive Transformation. More fundamentally he is living here!
We end up talking about who owes what for toilet paper and food, how loud is too loud, who’s going to pick up what and when, what he should be wearing, and ongoingly about topics I cannot predict – “Do you want to sell these clothes at a discount and make money?” - at times I cannot predict.
Peter’s Father died recently and, as I wrote about yesterday, Christmas clearly brings us back into the arenas of our Mothers, and these are different arenas indeed! This morning I realized that I have front row seats in his unfolding awareness that he is now living beyond his parents.
I don’t mind – I’m just not “ready” – whatever the hell that means!
I think this is one of those “good for me” moments in my life. What I learn and become in this time and space will serve me well as a person who longs to be intimately available outside of my personal support structures.
I simply need to be clear about what my own emotional, physical and social spaces are and be skilful at negotiating them without force and fear, but in love and trust. It’s the being clear that presents my learning curve.
I will keep you posted!
It’s been a long time since I shared my “household” with another person, outside of the ongoing presence of personal assistants. Over years of funny and difficult events I have become relatively good at creating the physical, emotional and social space that my assistants need to feel centred in my home and car. Having a continuous need to maintain a workplace within the intimate spaces of my life is a delicate balancing act, and one that I enjoy ongoingly paying attention to. This endeavour quite literally engages a large piece of my emotional availability and is a fulfilling pleasure for me.
Having a housemate is another thing! I realized in the wee hours of this morning that Peter is on some sort of emotional/spiritual journey right now that requires this space to be nurturing and open in ways that I am not familiar with. In other words the control freak in me is getting triggered.
I was once married and I imagine that I might like this sort of intimacy again. Right now I am getting to see why I’m not in that sort of relationship!
The space that assistants need can be bounded by me in ways that are perceived by everyone as legitimate. My supporters, paid and unpaid, agree with me that the fundamental reason for their presence in my life is to ensure that I can both live and participate in ways that work for me. There are endless negotiations and at the root of them is always this center – my life and my participation. This certainty gives a way to find articulation and direction.
Peter is here only in part as a personal assistant. He is also here as a colleague in the community development work of World Peace through Inclusive Transformation. More fundamentally he is living here!
We end up talking about who owes what for toilet paper and food, how loud is too loud, who’s going to pick up what and when, what he should be wearing, and ongoingly about topics I cannot predict – “Do you want to sell these clothes at a discount and make money?” - at times I cannot predict.
Peter’s Father died recently and, as I wrote about yesterday, Christmas clearly brings us back into the arenas of our Mothers, and these are different arenas indeed! This morning I realized that I have front row seats in his unfolding awareness that he is now living beyond his parents.
I don’t mind – I’m just not “ready” – whatever the hell that means!
I think this is one of those “good for me” moments in my life. What I learn and become in this time and space will serve me well as a person who longs to be intimately available outside of my personal support structures.
I simply need to be clear about what my own emotional, physical and social spaces are and be skilful at negotiating them without force and fear, but in love and trust. It’s the being clear that presents my learning curve.
I will keep you posted!
Saturday, December 11, 2010
December 11, 2010
It’s beginning to look a lot like Christmas!
Peter has been living in my “spare” room since early September. He gets to stay in return for giving me pro bono one shift a week of personal assistance, and for doing some inclusive community development around this housing cooperative, Robert Cooke.
The other day Peter brought home a “Christmas tree” constructed from 111 Coke cans coated in silver paint which has partly worn away, and a string of Christmas lights so old that Peter is having trouble finding replacement bulbs and sockets. This artefact was constructed by his mother – likely 50 years ago or so. Yesterday he brought home a “wreath” made almost entirely from twigs with barely a speck of green.
It’s funny how something can occur that makes one realize that one – I – actually care about something. The Coke can sculpture is a memento and a sort of heirloom for Peter and so even though in my view it doesn’t qualify as something that has a genre, like kitsch or retro, I recognize that it’s going to have a place in my household. But when it showed up, and especially when the round pile of twigs arrived, I realized that if we’re going to decorate around here for Christmas it better look LIKE Christmas to me.
Now, what does Christmas look like – to me! Well – green for starters. Secondly, not like Good Friday where utter bareness makes sense. My intellect “knows” these thoughts are not relative to any fixed reality, but the rest of me feels that Christmas is about new life, regeneration, hope reborn, and that the symbols of this ought to reflect new growth.
So we nailed the twigs to Peter’s bedroom door and I bought a Santa to sit on top of the pile of silvered cans along with some bows and beads to drape and paste so as to soften the severity of the piece. I also placed a small woven red and green decoration on the front door of our place. Now it’s time to do a little cleaning and to dig out the ornaments that have been in storage bins for over two years and give the pad a festive look.
Possibly one of the strongest effects of my Mother’s Alzeimers was that Christmas became an uncertain experience. There was a point when I was in my mid 20’s that I actively resisted celebrating Christmas. But from the time I was 29 until the year that Mom and Dad first moved into a retirement residence, Christmas varied little.
Mother always insisted that all four of her children be with her for this celebration. I imagine that there were a few years when my elder brother Ian was unable to attend because he was somewhere out of the country with the Canadian Armed Services. Otherwise we all showed up and generally speaking our spouses – permanent or temporary – showed up as well.
Mother always had a fabulously decorated tree. On Christmas Day itself she did not relinquish the kitchen to anyone. The meal was invariably rich, festive and abundant.
There were other invariant aspects as well. For example, my mother (and later my siblings) always took care to place me in exactly the spot where I was to remain for the entire occasion. The sole exception to this was when I moved to and from my assigned spot beside Dad at the dinner table.
In later years, we adopted a different pattern for present giving. At my sister, Rosemary’s, encouragement we put a price limit on the presents and reduced the number that were given. Later, but after Mom and Dad were in the retirement home, Christmas was held in one or other of the siblings homes and we used a Secret Santa strategy which was not only less expensive but a whole lot more fun for all of us.
But mother passed away two and a half years ago and suddenly there was no longer a clear sense that we would all gather in the same place. I do not believe that I have been to a family Christmas dinner since that time and I won’t be this year either.
So I find myself attracted to the idea that Peter would want to decorate our apartment with his mother’s Christmas tree even though, and at the very same moment, I am repelled by its tackiness. My own mother would never have let such a thing exist in her space.
For myself, at this time, I am merely reflecting on how intensely I am experiencing a need to do something that counterbalances both my own mother’s rigidity and Peter’s (and his mother’s) different sense of value. December 25th at 20 Garnett Janes Road Apartment 812 will be a very different day indeed!
Peter has been living in my “spare” room since early September. He gets to stay in return for giving me pro bono one shift a week of personal assistance, and for doing some inclusive community development around this housing cooperative, Robert Cooke.
The other day Peter brought home a “Christmas tree” constructed from 111 Coke cans coated in silver paint which has partly worn away, and a string of Christmas lights so old that Peter is having trouble finding replacement bulbs and sockets. This artefact was constructed by his mother – likely 50 years ago or so. Yesterday he brought home a “wreath” made almost entirely from twigs with barely a speck of green.
It’s funny how something can occur that makes one realize that one – I – actually care about something. The Coke can sculpture is a memento and a sort of heirloom for Peter and so even though in my view it doesn’t qualify as something that has a genre, like kitsch or retro, I recognize that it’s going to have a place in my household. But when it showed up, and especially when the round pile of twigs arrived, I realized that if we’re going to decorate around here for Christmas it better look LIKE Christmas to me.
Now, what does Christmas look like – to me! Well – green for starters. Secondly, not like Good Friday where utter bareness makes sense. My intellect “knows” these thoughts are not relative to any fixed reality, but the rest of me feels that Christmas is about new life, regeneration, hope reborn, and that the symbols of this ought to reflect new growth.
So we nailed the twigs to Peter’s bedroom door and I bought a Santa to sit on top of the pile of silvered cans along with some bows and beads to drape and paste so as to soften the severity of the piece. I also placed a small woven red and green decoration on the front door of our place. Now it’s time to do a little cleaning and to dig out the ornaments that have been in storage bins for over two years and give the pad a festive look.
Possibly one of the strongest effects of my Mother’s Alzeimers was that Christmas became an uncertain experience. There was a point when I was in my mid 20’s that I actively resisted celebrating Christmas. But from the time I was 29 until the year that Mom and Dad first moved into a retirement residence, Christmas varied little.
Mother always insisted that all four of her children be with her for this celebration. I imagine that there were a few years when my elder brother Ian was unable to attend because he was somewhere out of the country with the Canadian Armed Services. Otherwise we all showed up and generally speaking our spouses – permanent or temporary – showed up as well.
Mother always had a fabulously decorated tree. On Christmas Day itself she did not relinquish the kitchen to anyone. The meal was invariably rich, festive and abundant.
There were other invariant aspects as well. For example, my mother (and later my siblings) always took care to place me in exactly the spot where I was to remain for the entire occasion. The sole exception to this was when I moved to and from my assigned spot beside Dad at the dinner table.
In later years, we adopted a different pattern for present giving. At my sister, Rosemary’s, encouragement we put a price limit on the presents and reduced the number that were given. Later, but after Mom and Dad were in the retirement home, Christmas was held in one or other of the siblings homes and we used a Secret Santa strategy which was not only less expensive but a whole lot more fun for all of us.
But mother passed away two and a half years ago and suddenly there was no longer a clear sense that we would all gather in the same place. I do not believe that I have been to a family Christmas dinner since that time and I won’t be this year either.
So I find myself attracted to the idea that Peter would want to decorate our apartment with his mother’s Christmas tree even though, and at the very same moment, I am repelled by its tackiness. My own mother would never have let such a thing exist in her space.
For myself, at this time, I am merely reflecting on how intensely I am experiencing a need to do something that counterbalances both my own mother’s rigidity and Peter’s (and his mother’s) different sense of value. December 25th at 20 Garnett Janes Road Apartment 812 will be a very different day indeed!
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.
Wednesday, December 8, 2010
December 8, 2010
I sent in my first draft to the ROM today. Although readers will know much of what I wrote I feel that the recipients ought to read it before I share it broadly. So tonight I will share something I wrote in November 2004 for l’Agora magazine.
Seeing Differently
Once I was crossing some streets in the town of Stratford, Ontario, returning to my van after some window shopping. I nearly ran over my friend who was crossing with me. His next question made me realize that he probably thought I either can’t see very well, or am a crazed driver. He asked why I crossed that street, and others, using a veering pathway, rather like tacking a sailboat upstream.
I explained that I do this so I can see cars coming. It is difficult for me to turn my head very much and I rely on my excellent peripheral vision to see around me. Wheelchairs don’t move sideways and, (in a motion that is very typical for “walkees”), they don’t move in one direction while twisting around to look in another. Consequently, to be sure that I am not about to be run down, I veer from side to side, in a zig-zag motion, when I am jay-walking!
I went on to explain that the world is almost always constructed as if everyone stood and walked. I have been on the second floor of a building with no elevator so few times in my life that I can’t imagine what a walk-up dentist’s office or an upstairs bedroom may look like. This might seem inconsequential to most readers, but it can have profound effects on the life of a person who uses a wheelchair.
In the mid-80’s, a young man named Justin Clarke sought permission in the Ontario courts to move out of a large institution where his parents placed him when he was a child. Friends had invited him to move with them into a cooperative housing development in Ottawa. His parents claimed that he was incompetent to make such a decision.
Mr. Clarke was thought to be unable to “benefit” from an education, so he was only offered the opportunity to learn to read and write when he was already a teenager. At that time it was discovered that he could use a spelling board very creatively.
Even more than I, Mr. Clarke knew very little about the second floors of our world. In fact he knew almost nothing about houses at all, having spent the majority of his life living in a large building that is a half a kilometer long.
The court wanted Mr. Clarke to explain how he intended to live and on describing the kind of house he thought he could live in. If you had lived Mr. Clarke’s life experience how would you have answered these questions?
Fortunately Justin Clarke had a judge who could understand that different people see different things. The judge set him free.
Sometimes it turns out that I have the advantage. In 1990 I made my first trip to the UK and some friends and I went to the great stone circle at Stonehenge. This sacred place has been roped off since 1975 and tourists can only see it from a distance. As I sat at the rope a security guard approached my friend and said: “Would the lady like to see it closer up?”
The lady (me!) said: “I certainly would!!!”
We wheeled right into the centre of the stones and I sat looking east through the space between two pillars. The security guard bent down to look and said: “The people who built this place were on average only 4 ft. 3 in. tall and you have to stoop to see why they designed the line of sight in this way.”
Sitting as I do in my wheelchair - as I was doing at that moment - I am 4 ft. 3 in. tall.
Seeing Differently
Once I was crossing some streets in the town of Stratford, Ontario, returning to my van after some window shopping. I nearly ran over my friend who was crossing with me. His next question made me realize that he probably thought I either can’t see very well, or am a crazed driver. He asked why I crossed that street, and others, using a veering pathway, rather like tacking a sailboat upstream.
I explained that I do this so I can see cars coming. It is difficult for me to turn my head very much and I rely on my excellent peripheral vision to see around me. Wheelchairs don’t move sideways and, (in a motion that is very typical for “walkees”), they don’t move in one direction while twisting around to look in another. Consequently, to be sure that I am not about to be run down, I veer from side to side, in a zig-zag motion, when I am jay-walking!
I went on to explain that the world is almost always constructed as if everyone stood and walked. I have been on the second floor of a building with no elevator so few times in my life that I can’t imagine what a walk-up dentist’s office or an upstairs bedroom may look like. This might seem inconsequential to most readers, but it can have profound effects on the life of a person who uses a wheelchair.
In the mid-80’s, a young man named Justin Clarke sought permission in the Ontario courts to move out of a large institution where his parents placed him when he was a child. Friends had invited him to move with them into a cooperative housing development in Ottawa. His parents claimed that he was incompetent to make such a decision.
Mr. Clarke was thought to be unable to “benefit” from an education, so he was only offered the opportunity to learn to read and write when he was already a teenager. At that time it was discovered that he could use a spelling board very creatively.
Even more than I, Mr. Clarke knew very little about the second floors of our world. In fact he knew almost nothing about houses at all, having spent the majority of his life living in a large building that is a half a kilometer long.
The court wanted Mr. Clarke to explain how he intended to live and on describing the kind of house he thought he could live in. If you had lived Mr. Clarke’s life experience how would you have answered these questions?
Fortunately Justin Clarke had a judge who could understand that different people see different things. The judge set him free.
Sometimes it turns out that I have the advantage. In 1990 I made my first trip to the UK and some friends and I went to the great stone circle at Stonehenge. This sacred place has been roped off since 1975 and tourists can only see it from a distance. As I sat at the rope a security guard approached my friend and said: “Would the lady like to see it closer up?”
The lady (me!) said: “I certainly would!!!”
We wheeled right into the centre of the stones and I sat looking east through the space between two pillars. The security guard bent down to look and said: “The people who built this place were on average only 4 ft. 3 in. tall and you have to stoop to see why they designed the line of sight in this way.”
Sitting as I do in my wheelchair - as I was doing at that moment - I am 4 ft. 3 in. tall.
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.
Monday, December 6, 2010
December 6, 2010
I have been actively writing a brief for the ROM so tonight I will share something I wrote on April 15, 2009.
Struggling Out of the Disability Box
Recently I viewed the documentary “Shameless” which is a celebration of Bonnie Sherr Klein’s return to filmmaking after being rendered unable to pursue her career for many years by two strokes. The video is shot in company with four others who are similarly accomplished artists who self identify as disabled. The following is the text of my comments to Catherine Frazee who is featured in the documentary and who is a professor at Ryerson University’s School of Disability Studies. I am hopeful that she will post a reply.
“I feel estranged from the growing crowd of advocates with disability who are actively giving definition to the disability culture. I watched the video with longing and sadness, of course recognizing myself sitting behind you in the scene where you spoke at the Latimer vigil that cold February morning. I was not chosen to be a part of creating Shameless. If I had been asked I likely would have said “No”. I am not part of the Ryerson gang. Though I am an artist, and paint regularly along side of others who are considered to be disabled, likely I will rarely choose or be asked to participate in disability arts events. I’m not complaining – I exclude myself.
The watershed is simply that I continue to believe in and to explore the possibility that I am not disabled, and that no one else is either. This mission of mine drives a wedge between me and my colleagues, such as yourself who is avidly creating disability pride and disability culture.
Last night and today some thoughts gelled, so I write to clarify and share them, and hopefully elicit a response.
In Shameless Bonnie Sherr said something like: “Once I was a person who made documentaries. Then I was a person with disabilities. Now I am a filmmaker with disabilities.”
What struck me is how in this statement “disability” is pretty much equivalent to “making documentaries”, in the sense of being a vocation or mission. It’s as if Bonnie is saying: “My first and chosen mission in life was to make documentaries, my second, forced/surprise mission was to be disabled, and now I can have both vocations.”
This is interesting to me because I am currently struggling to get myself out of what I see as a career box. Before I became involved in disability rights and inclusion I was training to be a psychological counselor and also interested in Mathematics. The sort of life choices that you are very familiar with presented themselves, and from 1976 until now every career choice has been related to disability. Not to go into details, I am now strongly suspecting that I was recently refused a job due to discrimination based on….. It’s subtle. Certainly the discrimination, if that is what it was, is not a blatant refusal to recognize my abilities. However, my career history cannot document the explicit credentials. Of course it can’t – getting the credentials was never open to me. I have equivalent experience, but it doesn’t look typical. But there in lies the discrimination. Why does it have to look typical?
So disability can indeed be a career. But it is not my ability and function, or absent ability or function, that is the basis of disability as a career. Nor is it Bonnie’s alteration in ability and function. Bonnie is a top notch creator of documentaries, before and since her brain injury, as well as a superlative wife and mother. These are her careers. What makes “disability” a career is our society’s insistence that this is who we are – disabled!
When I examine the word and the concept I see three things.
1) Disability as loss of function – the injured baseball player is placed on the disabled list. Such a person is expected to recover the same functions. When a person such as Bonnie recovers to different functions, or Catherine and Judith build a life without every having certain functions, are we thinking about and experiencing the same phenomenon. I don’t think so.
2) Disability as career. (see above)
3) Disability as opposite or counter to ability. Is a Black person a non-White? Is a woman a non-male? Is a lesbian not a woman? Of course these ideas have existed. Mostly they have been put in history’s waste basket. Why do we choose to explain ourselves in these terms as if ability were a linear phenomenon and our job is to keep on explaining that we didn’t really get the raw end of the stick?
I am struggling in three ways. First I am struggling to know who I am – myself. To the extent that I can own but not be driven by the above named misperceptions, to fight but not be defined by the constant erosion of the supports I use to participate in life, plus not be dominated by the spectre of poverty always lurking and all the other life degrading cultural phenomenon we all face, I am in constant search to know myself as real.
Secondly, I am struggling to make personal assistance visible. I was struck by the absence of personal assistants in Shameless, though this is not meant as a criticism since the presentation was complete in itself. However, neither Pat nor Michael is a typical partner, and there are others besides Pat in your own life who assist you in your creation of your life. I believe that for others to realize that we are not bad copies of the people we should have been, the contributions that we make to those who assist, and they to us, must be made visible and celebrated in the world. This work is also part of ending the hegemony of individualism.
Lastly, I struggle with the invisibility in the disability pride world of those who don’t speak and who are usually labeled as “profoundly developmentally delayed”. Since the early ‘80’s I have intentionally sought to know and understand the experiences and contributions of quiet people - people who live nearly exclusively through the bodies and voices of others. Their presence and contributions are evident, but generally ignored, misrepresented and discouraged. From the “independent living” movement until now not many have been willing to acknowledge that “they are us” too.
I deeply wish that we had another set of words and phrases to express the infinitely rich sphere of ways that human bodies show up on this planet, and the wonderfully rich, uncountable contributions this makes possible. Such words would make visible that human ability and the careers we pursue are related, but not the same, phenomenon. Such language would give us a strong foundation for not just accepting and tolerating, but fully celebrating, diversity. Such conversational capacity would put you and me on the same side of this fundamental liberation movement.
But for now I am simply stuck with saying and writing that I am not and never have been disabled.”
Struggling Out of the Disability Box
Recently I viewed the documentary “Shameless” which is a celebration of Bonnie Sherr Klein’s return to filmmaking after being rendered unable to pursue her career for many years by two strokes. The video is shot in company with four others who are similarly accomplished artists who self identify as disabled. The following is the text of my comments to Catherine Frazee who is featured in the documentary and who is a professor at Ryerson University’s School of Disability Studies. I am hopeful that she will post a reply.
“I feel estranged from the growing crowd of advocates with disability who are actively giving definition to the disability culture. I watched the video with longing and sadness, of course recognizing myself sitting behind you in the scene where you spoke at the Latimer vigil that cold February morning. I was not chosen to be a part of creating Shameless. If I had been asked I likely would have said “No”. I am not part of the Ryerson gang. Though I am an artist, and paint regularly along side of others who are considered to be disabled, likely I will rarely choose or be asked to participate in disability arts events. I’m not complaining – I exclude myself.
The watershed is simply that I continue to believe in and to explore the possibility that I am not disabled, and that no one else is either. This mission of mine drives a wedge between me and my colleagues, such as yourself who is avidly creating disability pride and disability culture.
Last night and today some thoughts gelled, so I write to clarify and share them, and hopefully elicit a response.
In Shameless Bonnie Sherr said something like: “Once I was a person who made documentaries. Then I was a person with disabilities. Now I am a filmmaker with disabilities.”
What struck me is how in this statement “disability” is pretty much equivalent to “making documentaries”, in the sense of being a vocation or mission. It’s as if Bonnie is saying: “My first and chosen mission in life was to make documentaries, my second, forced/surprise mission was to be disabled, and now I can have both vocations.”
This is interesting to me because I am currently struggling to get myself out of what I see as a career box. Before I became involved in disability rights and inclusion I was training to be a psychological counselor and also interested in Mathematics. The sort of life choices that you are very familiar with presented themselves, and from 1976 until now every career choice has been related to disability. Not to go into details, I am now strongly suspecting that I was recently refused a job due to discrimination based on….. It’s subtle. Certainly the discrimination, if that is what it was, is not a blatant refusal to recognize my abilities. However, my career history cannot document the explicit credentials. Of course it can’t – getting the credentials was never open to me. I have equivalent experience, but it doesn’t look typical. But there in lies the discrimination. Why does it have to look typical?
So disability can indeed be a career. But it is not my ability and function, or absent ability or function, that is the basis of disability as a career. Nor is it Bonnie’s alteration in ability and function. Bonnie is a top notch creator of documentaries, before and since her brain injury, as well as a superlative wife and mother. These are her careers. What makes “disability” a career is our society’s insistence that this is who we are – disabled!
When I examine the word and the concept I see three things.
1) Disability as loss of function – the injured baseball player is placed on the disabled list. Such a person is expected to recover the same functions. When a person such as Bonnie recovers to different functions, or Catherine and Judith build a life without every having certain functions, are we thinking about and experiencing the same phenomenon. I don’t think so.
2) Disability as career. (see above)
3) Disability as opposite or counter to ability. Is a Black person a non-White? Is a woman a non-male? Is a lesbian not a woman? Of course these ideas have existed. Mostly they have been put in history’s waste basket. Why do we choose to explain ourselves in these terms as if ability were a linear phenomenon and our job is to keep on explaining that we didn’t really get the raw end of the stick?
I am struggling in three ways. First I am struggling to know who I am – myself. To the extent that I can own but not be driven by the above named misperceptions, to fight but not be defined by the constant erosion of the supports I use to participate in life, plus not be dominated by the spectre of poverty always lurking and all the other life degrading cultural phenomenon we all face, I am in constant search to know myself as real.
Secondly, I am struggling to make personal assistance visible. I was struck by the absence of personal assistants in Shameless, though this is not meant as a criticism since the presentation was complete in itself. However, neither Pat nor Michael is a typical partner, and there are others besides Pat in your own life who assist you in your creation of your life. I believe that for others to realize that we are not bad copies of the people we should have been, the contributions that we make to those who assist, and they to us, must be made visible and celebrated in the world. This work is also part of ending the hegemony of individualism.
Lastly, I struggle with the invisibility in the disability pride world of those who don’t speak and who are usually labeled as “profoundly developmentally delayed”. Since the early ‘80’s I have intentionally sought to know and understand the experiences and contributions of quiet people - people who live nearly exclusively through the bodies and voices of others. Their presence and contributions are evident, but generally ignored, misrepresented and discouraged. From the “independent living” movement until now not many have been willing to acknowledge that “they are us” too.
I deeply wish that we had another set of words and phrases to express the infinitely rich sphere of ways that human bodies show up on this planet, and the wonderfully rich, uncountable contributions this makes possible. Such words would make visible that human ability and the careers we pursue are related, but not the same, phenomenon. Such language would give us a strong foundation for not just accepting and tolerating, but fully celebrating, diversity. Such conversational capacity would put you and me on the same side of this fundamental liberation movement.
But for now I am simply stuck with saying and writing that I am not and never have been disabled.”
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!
Saturday, December 4, 2010
December 4, 2010
The mental space for subconscious cogitation has become full – as the King James version said: “in the fullness of time”. I am laden with concepts for the ROM exhibit and ready to give birth.
My exhibit room is roughly 20 feet by 24 with a long, flat display panel in the middle of the room from which can be hung paintings or video screens. The walls are white, the ceiling perhaps 20 feet high or more and abundant track lighting is hung, making the room bright and very suitable as an art gallery.
They told me that the room was essentially a thoroughfare for visitors and staff moving from the Rotunda or elevators to the dinosaur exhibit. When they showed me the room I observed this flow – everything from “guests” to garbage disposal units. The challenge is to entice visitors to step out of the flow and spend some time – maybe time that they had allocated for other exhibits – dipping into and dallying with Inclusion.
Other limitations – not necessarily BARRIERS – are that:
- floor space to move around in, after the “stuff” is placed, is not ample
- there is no apparent expectation that the exhibit will cater to children, those who lie down or those with unusual sensitivities or interests in light or sound
- sharing the experience of play or interaction in general is NOT encouraged.
In addition I have many long term partners and relationships that I want to share this with: Laser Eagles, the Marsha Forest Centre, the Book of Judith, Wisdom, Atkinson and WPIT. It is my chance to shine BUT I am all about community, relationships, collaboration and partnerships and it can’t be only about ME.
There is clearly a process to follow and I am not privy to anything but the bare bones of it. For example I have no knowledge of what the budget might look like or what part I might play in it. I don’t know who gets pissed off about what.
Finally it remains unclear why I am about to do this. From the ROM’s perspective this is a grand opportunity to have at least one Board member participate deeply in the inner workings of the museum while at the same time spending a dedicated budget on a project that can meet the accessibility mandate AND be a quality piece of work. This show also opens a door for several of their potential partners – the AGO being one as well as other groups and facilities in the province.
What do I want out of this, and of that list, what are the deal breakers?
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.
I would like to make $60,000 in 2011 and have a 4 week vacation with the pelicans. As part of this I would LOVE to lose ODSP.
I would like a book to get written, published, to sell well and to launch my ideas through related videos and other media.
I would like to get a proper teaching venu out of this where I have real control over the teacher, student, content dynamic.
I would like the various partners to get to understand me, each other and Inclusion, and to have mutually satisfactory results.
I would like to enjoy it all.
My exhibit room is roughly 20 feet by 24 with a long, flat display panel in the middle of the room from which can be hung paintings or video screens. The walls are white, the ceiling perhaps 20 feet high or more and abundant track lighting is hung, making the room bright and very suitable as an art gallery.
They told me that the room was essentially a thoroughfare for visitors and staff moving from the Rotunda or elevators to the dinosaur exhibit. When they showed me the room I observed this flow – everything from “guests” to garbage disposal units. The challenge is to entice visitors to step out of the flow and spend some time – maybe time that they had allocated for other exhibits – dipping into and dallying with Inclusion.
Other limitations – not necessarily BARRIERS – are that:
- floor space to move around in, after the “stuff” is placed, is not ample
- there is no apparent expectation that the exhibit will cater to children, those who lie down or those with unusual sensitivities or interests in light or sound
- sharing the experience of play or interaction in general is NOT encouraged.
In addition I have many long term partners and relationships that I want to share this with: Laser Eagles, the Marsha Forest Centre, the Book of Judith, Wisdom, Atkinson and WPIT. It is my chance to shine BUT I am all about community, relationships, collaboration and partnerships and it can’t be only about ME.
There is clearly a process to follow and I am not privy to anything but the bare bones of it. For example I have no knowledge of what the budget might look like or what part I might play in it. I don’t know who gets pissed off about what.
Finally it remains unclear why I am about to do this. From the ROM’s perspective this is a grand opportunity to have at least one Board member participate deeply in the inner workings of the museum while at the same time spending a dedicated budget on a project that can meet the accessibility mandate AND be a quality piece of work. This show also opens a door for several of their potential partners – the AGO being one as well as other groups and facilities in the province.
What do I want out of this, and of that list, what are the deal breakers?
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.
I would like to make $60,000 in 2011 and have a 4 week vacation with the pelicans. As part of this I would LOVE to lose ODSP.
I would like a book to get written, published, to sell well and to launch my ideas through related videos and other media.
I would like to get a proper teaching venu out of this where I have real control over the teacher, student, content dynamic.
I would like the various partners to get to understand me, each other and Inclusion, and to have mutually satisfactory results.
I would like to enjoy it all.
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