I apologize to readers. Last night I forgot to blog! Just plain forgot until I was already in bed.
In some ways, since I blogged about the prison cells collected outside my window, I have lived a rather drunk, rather surreal life. Not literally drunk – I have had no alcohol and very little Morphine. Rather I have thrown my hat thoroughly into Cycle 3 and now it is simply unfolding. With this come demands – on my time, listening, focus, energy, stamina, words. There are demands from my assistants, ACF, ODSP, the Marsha Forest Centre, the Wisdom City Team, from my circle, my body, Father, WPIT, e-mail, Laser Eagles, the ROM?, the Book of Judith. I am not complaining – just spinning!
It all stems from taking myself seriously – perhaps way too seriously. I continue to imagine that I can transform the world by transforming how diversity is valued and included. Mike and I saw “The King’s Speech” again tonight, and though I waiver between whether I am more like George or Lionel I know (as in KNOW) I have an essential part in a drama much bigger than myself. Everything speaks to me as a potential means of finding a pathway to peace through Inclusion so I can turn down very little these days. That, and the ongoing search for $$’s, keeps prodding me on.
This morning Mike and I met with ACF and their poverty reduction champions and this afternoon with old and new members of the ACF Board and the Inclusion Circle. In all we met for over six hours. Mike was still raring to go after it all, but I was exhausted. For me the morning was mainly about listening, and listening to mainly whining, grieving and nostalgia for days when organizing seemed clearer. Listening took place on top of my own weary concern with feeling like once again I am being drawn into strategies that don’t work,
In the afternoon I felt the need to speak up about how it seems that ACF has not implemented the Inclusion Task Force recommendations. That and other people’s stuff led to a much livelier energy. However, at the end of the day (literally), it still remains in the hands of others to decide when, who and for what end this process will continue.
Going into the movie I lined up behind a young woman who is familiar to me from the Wisdom Course. Coming out we ran into a woman and her friend/supporter, both of whom were active twenty-five years ago in some committee or other that I was part of, probably the Ontario Advocacy Coalition. I felt that a certain element of safety and familiarity was added back into my day. In particular the woman who has a long term cognitive difference after a brain haemorrhage that she had in 1970 brought back the joyful sense that life is to be celebrated. She is just the sort of person I want to bring to lunch with ACF – Mary Lou, Miriam, Chloe, Greg and Felicia – the people who show me over and over again that it is way more effective in the end to stop trying to fix everything, and to enjoy the food, the company and the movie.
Speaking of lunch, I had the best roast beef sandwich I think I have ever had in my life. I could chew and swallow every bite, and I ate the WHOLE thing.
Showing posts with label safety. Show all posts
Showing posts with label safety. Show all posts
Tuesday, January 25, 2011
Tuesday, January 18, 2011
January 18, 2011
Today:
- The GTA, and apparently lots of the eastern seaboard, stopped in anticipation of an ice storm, or because it really hit. Here in the city of Toronto proper it was all hype. Mike and I walked to and from Laser Eagles.
- Mike and a little bit I started to draft the WPIT organization chart, with the Smart Draw software Peter Christianson bought for us.
- We made real progress with the painting “Dirty Window”, and painted another left over paint piece.
- Elizabeth and I made a little progress with grant writing.
- I landed a small monthly job.
The stuff I DIDN’T get done fills another half page. My desk is a mess. Stuff “to do” is spilling onto the printer, the dining table, the bureau, sometimes my bed.
I haven’t yet started reading the draft of my book!
When life gets like this I get jittery. Yes, I have moments when I experience the “going forward” but I also feel the anxiety of fearing that the “not done” will sneak up and bite me in the ass. Why have I not yet written contracts with Mike, Kimberly, Dan, Elizabeth and Peter? What about scheduling, performance reviews, hiring, training, What about fund raising for the assistant’s salaries? Etc., etc.
Tomorrow I must get “real” and figure out who is going to take some of this on. Gloria keeps on saying I don’t give things away. I don’t think this is what she means, exactly, but somehow I literally can’t keep up with myself, or so it seems today.
At the same time I believe that the jitters really come from the small me fighting the international me, somehow worried that I am not “safe” playing out my life and vision in this way. Be small “it” says. Take on less. Don’t expose yourself.
Well it’s too late for that now, isn’t it!
I have heard it said that a powerful road to success is to plan to fail often and progressively – learning something with each failure. If this works, what failure could I take on next which would make a real difference?
Some candidates are:
- finding two executive assistants
- selling my art for big bucks
- preselling my book
- How about – getting the Nobel Peace Prize? I like that one!
Tomorrow I will start to find out what it takes to win the Nobel Peace Prize! Even if I never get it, putting the steps into place must make a genuine difference in how the world views and does Inclusion.
- The GTA, and apparently lots of the eastern seaboard, stopped in anticipation of an ice storm, or because it really hit. Here in the city of Toronto proper it was all hype. Mike and I walked to and from Laser Eagles.
- Mike and a little bit I started to draft the WPIT organization chart, with the Smart Draw software Peter Christianson bought for us.
- We made real progress with the painting “Dirty Window”, and painted another left over paint piece.
- Elizabeth and I made a little progress with grant writing.
- I landed a small monthly job.
The stuff I DIDN’T get done fills another half page. My desk is a mess. Stuff “to do” is spilling onto the printer, the dining table, the bureau, sometimes my bed.
I haven’t yet started reading the draft of my book!
When life gets like this I get jittery. Yes, I have moments when I experience the “going forward” but I also feel the anxiety of fearing that the “not done” will sneak up and bite me in the ass. Why have I not yet written contracts with Mike, Kimberly, Dan, Elizabeth and Peter? What about scheduling, performance reviews, hiring, training, What about fund raising for the assistant’s salaries? Etc., etc.
Tomorrow I must get “real” and figure out who is going to take some of this on. Gloria keeps on saying I don’t give things away. I don’t think this is what she means, exactly, but somehow I literally can’t keep up with myself, or so it seems today.
At the same time I believe that the jitters really come from the small me fighting the international me, somehow worried that I am not “safe” playing out my life and vision in this way. Be small “it” says. Take on less. Don’t expose yourself.
Well it’s too late for that now, isn’t it!
I have heard it said that a powerful road to success is to plan to fail often and progressively – learning something with each failure. If this works, what failure could I take on next which would make a real difference?
Some candidates are:
- finding two executive assistants
- selling my art for big bucks
- preselling my book
- How about – getting the Nobel Peace Prize? I like that one!
Tomorrow I will start to find out what it takes to win the Nobel Peace Prize! Even if I never get it, putting the steps into place must make a genuine difference in how the world views and does Inclusion.
Tuesday, January 4, 2011
January 4, 2011
It was a double whammy sort of day. The back/leg pain is strong, then my chair broke down. Now I am lying in bed, and so is Mike, who also has felt crappy (and crabby) all day.
What is authentic expression right now? Whining, bitching, sleeping?
What is keeping my word right now? Blogging, figuring out how to get to the Atkinson meeting anyway, stating openly what isn’t going to get done?
It’s not going to be a two pager right now. The body/mind is too tired.
I can imagine a support circle that honoured my vision and my perspective, that fully got why I can’t stay home and play safe, AND worked with others who say they can imagine me reaching the world through video conference to make this years’ old dream come true. Then I wouldn’t have to be figuring out how I can be travelling ten weeks of this spring coming. Where are these pushy people who will make it happen?
I think, at the root of it, I haven’t stood enough for myself. Now I will. It is urgent!
What is authentic expression right now? Whining, bitching, sleeping?
What is keeping my word right now? Blogging, figuring out how to get to the Atkinson meeting anyway, stating openly what isn’t going to get done?
It’s not going to be a two pager right now. The body/mind is too tired.
I can imagine a support circle that honoured my vision and my perspective, that fully got why I can’t stay home and play safe, AND worked with others who say they can imagine me reaching the world through video conference to make this years’ old dream come true. Then I wouldn’t have to be figuring out how I can be travelling ten weeks of this spring coming. Where are these pushy people who will make it happen?
I think, at the root of it, I haven’t stood enough for myself. Now I will. It is urgent!
Monday, January 3, 2011
January 3, 2011
There is a little tug-o’-war going on in me these days. The “I don’t wanna’s” are pretty strong – I don’t wanna:
- fundraise
- have a support circle
- cut down on gluten and drink more fluids – not caffeinated ones at that
- invite people to the Completion Evening of Wisdom
- catch up on e-mail
- set up paying gigs for February and March
- get my eyes checked
- etc.
I DO wanna too, and generally I am doing a little better than 50% which is the level I was at for years.
Why the ambivalence? Well, besides not wanting to “stick out” I realized as I was waking up this morning that I have been reluctant to be honest and open about my life-long sense, strong and clear since I was twelve, that I have a personal relationship with God and that God has given me a mission – to create Inclusion, especially so that people who don’t speak can be seen and supported as contributors to society.
But this is a fact for me – one that has shaped all my life. Still I cannot imagine saying in public, or in front of my circle, certainly not frequently and bravely: “Got wants this and I want to do it!”
This reluctance to sound like a religious weirdo constantly gives strength to the “I don’t wanna’s”. It’s better to not stick out, but rather to look like I’m motivated by good thinking and research, to seem like I just want the same things as most people.
But probably I am not fooling anybody anyway. Clearly I DON’T want the same things as most people!
Being at the Terracotta Warriors exhibit last Friday reinforced deeply for me the realization that most people do not know that there is an alternative path to peace besides war. The visible evidence was impactful - that fighting for a stable society and community with abundance and opportunity for all is a way of every culture that goes back multiple millennia. It was also powerfully clear that this way is wasteful, bloody and ineffective.
The other clear message was that history takes no account of the needs, desires or contributions of ordinary people. They live and die hearing that their sole contribution to peace on earth is to support war, up to losing the lives of loved ones and themselves.
I have another way. It takes many ordinary people to build and sustain Inclusion. The good news is that when they do so they also build abundant economy and community, and eliminate the fear and inadequacy that lead to war.
Can I gather enough courage, faith, people and resources to get the message across so that all ordinary people know they have a choice and they know how to implement that choice?
- fundraise
- have a support circle
- cut down on gluten and drink more fluids – not caffeinated ones at that
- invite people to the Completion Evening of Wisdom
- catch up on e-mail
- set up paying gigs for February and March
- get my eyes checked
- etc.
I DO wanna too, and generally I am doing a little better than 50% which is the level I was at for years.
Why the ambivalence? Well, besides not wanting to “stick out” I realized as I was waking up this morning that I have been reluctant to be honest and open about my life-long sense, strong and clear since I was twelve, that I have a personal relationship with God and that God has given me a mission – to create Inclusion, especially so that people who don’t speak can be seen and supported as contributors to society.
But this is a fact for me – one that has shaped all my life. Still I cannot imagine saying in public, or in front of my circle, certainly not frequently and bravely: “Got wants this and I want to do it!”
This reluctance to sound like a religious weirdo constantly gives strength to the “I don’t wanna’s”. It’s better to not stick out, but rather to look like I’m motivated by good thinking and research, to seem like I just want the same things as most people.
But probably I am not fooling anybody anyway. Clearly I DON’T want the same things as most people!
Being at the Terracotta Warriors exhibit last Friday reinforced deeply for me the realization that most people do not know that there is an alternative path to peace besides war. The visible evidence was impactful - that fighting for a stable society and community with abundance and opportunity for all is a way of every culture that goes back multiple millennia. It was also powerfully clear that this way is wasteful, bloody and ineffective.
The other clear message was that history takes no account of the needs, desires or contributions of ordinary people. They live and die hearing that their sole contribution to peace on earth is to support war, up to losing the lives of loved ones and themselves.
I have another way. It takes many ordinary people to build and sustain Inclusion. The good news is that when they do so they also build abundant economy and community, and eliminate the fear and inadequacy that lead to war.
Can I gather enough courage, faith, people and resources to get the message across so that all ordinary people know they have a choice and they know how to implement that choice?
Friday, December 31, 2010
December 31, 2010
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!
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!
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?
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.
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.
Saturday, November 13, 2010
November 13, 2010
Somehow I have been kind of giddy all day as if I had taken too much of my two daily doses of Morphine. I didn’t. Part of it is sheer enjoyment of spending a day with Mike Skubic. A fine personal assistant, Mike is also very in tune with my personal purposes. So in one day we have improved the design of our under-construction WPIT website, looked at fundraising plans, spent exhilarating time with Tom James working on the inclusive video game project, and also accomplished all sorts of typical daily stuff – eating, washing and so on.
Perhaps I am just tired! It’s been a full day and it’s not done yet and I have been “up” – not in bed – for a big part of it.
Then there is the Morphine. This week I started to take 2/3 of the doses permitted to me each day, but regularly whether or not I was feeling pain at the time. Practically this works out that I am taking 2 ml at 11:00am and 5:00pm. The reasoning behind the reduced overall dosage is to give my bowels a good chance to empty themselves in the morning, before I slow them down with the narcotic. The reasoning behind regular administration is to give myself a chance to lower the base amount of pain I feel day by day.
The concern remains – in Mike, in others, in myself. Am I, will I become addicted? The effects of the drug are minimal, yet at about the 5th hour I am counting down - when can I have the next dose or when can I lie down again!
I am swearing more, getting excited more, going from grumpy to happy and back more quickly. Is it the blogging that is releasing my social inhibitions?
This afternoon I picked up the misplaced prescription – Amitriptyline Hydrochloride. Its potential side effects include constipation, nausea, urinary retention and other worse stuff. I am terrified to take it.
I guess my point is: “When you are up to your ass in alligators it is hard to remember that your original objective was to drain the swamp.” I want to be comfortable enough to fulfill my life. Apparently there is no treatable “cause” of my pain, so I must learn how to live with it. I do not want to shift my life goals to managing financial burdens and side effects. Yet the government funded allopathic pathway keeps throwing me into waiting lines and medication hell. To go outside this system promises more effective approaches but continuous and prohibitive costs as well.
The past few weeks or so my expensive, government funded, high quality hospital bed mattress began to develop wrinkles in the plastic cover. These wrinkles became more persistent and were developing into ridges. I cannot move my own body so these ridges are a risk not just of discomfort and pain, but also of skin breakdown and infection.
I called the distributor requesting immediate assistance and the person at the other end said it could be weeks before the problem could be rectified – but, she suggested, in the meantime why didn’t I remove the cover?
Now I have owned three or four hospital bed mattresses in my life time and slept on many more and never has one had a removable cover – until this one. So it never occurred to me to look for a zipper. It’s there! The wrinkled cover is now in a closet and I am sleeping on the best mattress you can imagine.
So, when it comes to me and my pain, is there a zipper?
Perhaps I am just tired! It’s been a full day and it’s not done yet and I have been “up” – not in bed – for a big part of it.
Then there is the Morphine. This week I started to take 2/3 of the doses permitted to me each day, but regularly whether or not I was feeling pain at the time. Practically this works out that I am taking 2 ml at 11:00am and 5:00pm. The reasoning behind the reduced overall dosage is to give my bowels a good chance to empty themselves in the morning, before I slow them down with the narcotic. The reasoning behind regular administration is to give myself a chance to lower the base amount of pain I feel day by day.
The concern remains – in Mike, in others, in myself. Am I, will I become addicted? The effects of the drug are minimal, yet at about the 5th hour I am counting down - when can I have the next dose or when can I lie down again!
I am swearing more, getting excited more, going from grumpy to happy and back more quickly. Is it the blogging that is releasing my social inhibitions?
This afternoon I picked up the misplaced prescription – Amitriptyline Hydrochloride. Its potential side effects include constipation, nausea, urinary retention and other worse stuff. I am terrified to take it.
I guess my point is: “When you are up to your ass in alligators it is hard to remember that your original objective was to drain the swamp.” I want to be comfortable enough to fulfill my life. Apparently there is no treatable “cause” of my pain, so I must learn how to live with it. I do not want to shift my life goals to managing financial burdens and side effects. Yet the government funded allopathic pathway keeps throwing me into waiting lines and medication hell. To go outside this system promises more effective approaches but continuous and prohibitive costs as well.
The past few weeks or so my expensive, government funded, high quality hospital bed mattress began to develop wrinkles in the plastic cover. These wrinkles became more persistent and were developing into ridges. I cannot move my own body so these ridges are a risk not just of discomfort and pain, but also of skin breakdown and infection.
I called the distributor requesting immediate assistance and the person at the other end said it could be weeks before the problem could be rectified – but, she suggested, in the meantime why didn’t I remove the cover?
Now I have owned three or four hospital bed mattresses in my life time and slept on many more and never has one had a removable cover – until this one. So it never occurred to me to look for a zipper. It’s there! The wrinkled cover is now in a closet and I am sleeping on the best mattress you can imagine.
So, when it comes to me and my pain, is there a zipper?
Wednesday, November 10, 2010
November 10, 2010
Today it is very tempting to give up my idea that this is about expression and simply to paste in some of the writing that I have been doing today, to try and sustain some order in my life.
At the beginning of all this writing was (and still is I think) a sense that Cycle 3 offered an opportunity for me to express myself in ways that I didn’t see or didn’t choose previously. I invented a distinction between expression and communication. “Communication” is all the speaking, writing, art work, etc. that I might do in order to influence, negotiate with and manipulate the world of people trying to get each other to do things with and for each other. “Expression” is speaking, writing, art, etc. for its own sake or perhaps for no sake at all! Of course there is no clear boundary.
Today I was writing email and ended up producing a large piece in defence of my financial situation and how I have managed it over the past – 28? – years. As the evening grows late it is tempting to simply paste in that email. The rest of the temptation is that the entire requirement to write that email came from another large message that questioned my situation and financial management. It pissed me off royally and I would love to just take a virtual slap back at the writer by making the whole thing public. Of course it’s going to get public anyway – this particular email that I responded to was sent to nearly every member of my family.
So what am I actually angry about?!? I think it is that (sucky baby?) I am unwilling to explain and defend myself, what I believe in and the pathways that I have chosen and WILL choose to fulfill my life.
It would be blissful, although clearly naïve, to imagine that in Cycle 3 I have gained enough trust and permission to do as I please without question. Sigh! It is not to be, is it?
At the same time I don’t want to get sucked into filling these two pagers with communication. Even though lots of people read these, the point of doing this is not to promote my “case”, but for me to actually get to see what my case is. As a friend said this morning, these writings are like verbal collages. After they are done and often in the process of doing them I get to understand myself and my world with a fresh perspective.
A strong theme has emerged in the past week. I have received many, many gifts over the years and particularly in the past few years as I have been living on a limited government pension. Many of these gifts have been financial. People who give me money frequently seem to feel that they are helping me out of a crisis. I believe that in the past I have actually believed myself that I was in a crisis. I guess I sometimes was!
The truth is though that there is a distinct difference between being in a crisis and being able to benefit from other people’s generosity. To define it somewhat simplistically – a crisis is when I am out of options. Many times when I have requested money from others or accepted money that wasn’t requested the appearance of that money has seemed like a very good option or at least the best option at the time. But rarely was it the only option. In other words, I have felt that I was making a choice in accepting the offer and not in any way agreeing to give up my capacity to choose what my next step in life would be.
It has become quite clear in both trivial and larger ways that many times people who are giving me money are then expecting me to make similar choices that they imagine they would make in my circumstances. In fact people often feel the right to insist that there is a path that I should take. Consequently over the years I have collected a number of people who are close to me who carry a bag of stories with them of how I have somehow failed to keep up my end of a bargain – a bargain that I was unaware of or only dimly aware of making.
Once again, I have no interest in blaming people for this. Even more so I have no interest in continuing the pattern. I see that it has been part of a convoluted pathway that leads me to either make poor choices or try to avoid certain situations or take on more than is good for me to take on or try to do things that I don’t want to do or to do things that make no sense to me. In another blog called “Ah, but that’s another story” I have written about how the process of receiving the benefit called the Ontario Disability Support Program limits and warps the lives of others who have been labelled disabled. I am now beginning to see how receiving largess is affecting me in similar ways.
I imagine – I dream – that I can gather the people who have been and continue to wish to be generous with me in some sort of large dialogue, and see if we can come to a basic agreement about what is the purpose of their generousity and what do they actually expect of me. This would give me the choice to turn down some people if the expectation is too different from the life that I intend to live. On the other hand it would give others and me a chance to be honest in a way that has not been possible in the past about how I make the choices I make and why I do some of the things that others find so odd.
I believe that people would come to realize that I largely steer my life through three lenses. The first is a strong sense that I have always felt that I have a God given purpose – a vocation. This sense is shifting strongly – I have written about this previously. I feel that I have more space than ever to have a personal enjoyment of my life as well as vocational accomplishment.
My second lens is a commitment to be served by my personal assistants in a way that benefits them and leads them to be able to live their lives more strongly conforming to their own sense of what is right for themselves. This leads to some intense dialogue and deep relationship – not with everyone of course – but with a large number of the people who have been in my life over the years. Many choices that I make are in the context of supporting these relationships.
The third lens came to me when I was twelve years old. I was sitting in the back of a church, behind a sea of adult heads, unable to see the minister or any of the activities that were taking place. I was miserable having recently been thrown out of Girl Guides because of my “disability”. I was encountering other barriers as well, and was rapidly learning that the world planned for me to fade away in a small room in my parent’s house.
I heard the minister read that God is love. It occurred to me that either this was a heinous lie and God had no interest what so ever in me or that God would participate with me in opening pathways for me to live a full life. As full as I was then, and now, of passion to have and do it all, I could not imagine the hell that lay before me if I was to be stopped at every turn.
And so on that day I choose to believe that God is indeed love and that that love would be expressed in my life by my always being able to find a way.
Of course how I see God now has changed from when I was twelve. However the principle upon which I live my life has not changed. I believe based on no evidence what so ever, but simply as a belief, that there is a way and I will find it. This has always given me the courage and the permission to pick up pieces, look for new pathways, make new friends, try new projects, ask boldly and otherwise live in search of possibilities that I do not yet know exist.
But the extreme way of looking at it that a twelve year old had perhaps is not the best way to look at it now. Perhaps my friends and family and I really could work out a way that would take out some of the concern and distress that they feel for my safety and sanity and still leave me with the freedom to choose new relationships, opportunities and pathways as they show up day by day.
I am looking forward to this dialogue.
At the beginning of all this writing was (and still is I think) a sense that Cycle 3 offered an opportunity for me to express myself in ways that I didn’t see or didn’t choose previously. I invented a distinction between expression and communication. “Communication” is all the speaking, writing, art work, etc. that I might do in order to influence, negotiate with and manipulate the world of people trying to get each other to do things with and for each other. “Expression” is speaking, writing, art, etc. for its own sake or perhaps for no sake at all! Of course there is no clear boundary.
Today I was writing email and ended up producing a large piece in defence of my financial situation and how I have managed it over the past – 28? – years. As the evening grows late it is tempting to simply paste in that email. The rest of the temptation is that the entire requirement to write that email came from another large message that questioned my situation and financial management. It pissed me off royally and I would love to just take a virtual slap back at the writer by making the whole thing public. Of course it’s going to get public anyway – this particular email that I responded to was sent to nearly every member of my family.
So what am I actually angry about?!? I think it is that (sucky baby?) I am unwilling to explain and defend myself, what I believe in and the pathways that I have chosen and WILL choose to fulfill my life.
It would be blissful, although clearly naïve, to imagine that in Cycle 3 I have gained enough trust and permission to do as I please without question. Sigh! It is not to be, is it?
At the same time I don’t want to get sucked into filling these two pagers with communication. Even though lots of people read these, the point of doing this is not to promote my “case”, but for me to actually get to see what my case is. As a friend said this morning, these writings are like verbal collages. After they are done and often in the process of doing them I get to understand myself and my world with a fresh perspective.
A strong theme has emerged in the past week. I have received many, many gifts over the years and particularly in the past few years as I have been living on a limited government pension. Many of these gifts have been financial. People who give me money frequently seem to feel that they are helping me out of a crisis. I believe that in the past I have actually believed myself that I was in a crisis. I guess I sometimes was!
The truth is though that there is a distinct difference between being in a crisis and being able to benefit from other people’s generosity. To define it somewhat simplistically – a crisis is when I am out of options. Many times when I have requested money from others or accepted money that wasn’t requested the appearance of that money has seemed like a very good option or at least the best option at the time. But rarely was it the only option. In other words, I have felt that I was making a choice in accepting the offer and not in any way agreeing to give up my capacity to choose what my next step in life would be.
It has become quite clear in both trivial and larger ways that many times people who are giving me money are then expecting me to make similar choices that they imagine they would make in my circumstances. In fact people often feel the right to insist that there is a path that I should take. Consequently over the years I have collected a number of people who are close to me who carry a bag of stories with them of how I have somehow failed to keep up my end of a bargain – a bargain that I was unaware of or only dimly aware of making.
Once again, I have no interest in blaming people for this. Even more so I have no interest in continuing the pattern. I see that it has been part of a convoluted pathway that leads me to either make poor choices or try to avoid certain situations or take on more than is good for me to take on or try to do things that I don’t want to do or to do things that make no sense to me. In another blog called “Ah, but that’s another story” I have written about how the process of receiving the benefit called the Ontario Disability Support Program limits and warps the lives of others who have been labelled disabled. I am now beginning to see how receiving largess is affecting me in similar ways.
I imagine – I dream – that I can gather the people who have been and continue to wish to be generous with me in some sort of large dialogue, and see if we can come to a basic agreement about what is the purpose of their generousity and what do they actually expect of me. This would give me the choice to turn down some people if the expectation is too different from the life that I intend to live. On the other hand it would give others and me a chance to be honest in a way that has not been possible in the past about how I make the choices I make and why I do some of the things that others find so odd.
I believe that people would come to realize that I largely steer my life through three lenses. The first is a strong sense that I have always felt that I have a God given purpose – a vocation. This sense is shifting strongly – I have written about this previously. I feel that I have more space than ever to have a personal enjoyment of my life as well as vocational accomplishment.
My second lens is a commitment to be served by my personal assistants in a way that benefits them and leads them to be able to live their lives more strongly conforming to their own sense of what is right for themselves. This leads to some intense dialogue and deep relationship – not with everyone of course – but with a large number of the people who have been in my life over the years. Many choices that I make are in the context of supporting these relationships.
The third lens came to me when I was twelve years old. I was sitting in the back of a church, behind a sea of adult heads, unable to see the minister or any of the activities that were taking place. I was miserable having recently been thrown out of Girl Guides because of my “disability”. I was encountering other barriers as well, and was rapidly learning that the world planned for me to fade away in a small room in my parent’s house.
I heard the minister read that God is love. It occurred to me that either this was a heinous lie and God had no interest what so ever in me or that God would participate with me in opening pathways for me to live a full life. As full as I was then, and now, of passion to have and do it all, I could not imagine the hell that lay before me if I was to be stopped at every turn.
And so on that day I choose to believe that God is indeed love and that that love would be expressed in my life by my always being able to find a way.
Of course how I see God now has changed from when I was twelve. However the principle upon which I live my life has not changed. I believe based on no evidence what so ever, but simply as a belief, that there is a way and I will find it. This has always given me the courage and the permission to pick up pieces, look for new pathways, make new friends, try new projects, ask boldly and otherwise live in search of possibilities that I do not yet know exist.
But the extreme way of looking at it that a twelve year old had perhaps is not the best way to look at it now. Perhaps my friends and family and I really could work out a way that would take out some of the concern and distress that they feel for my safety and sanity and still leave me with the freedom to choose new relationships, opportunities and pathways as they show up day by day.
I am looking forward to this dialogue.
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