It’s the day before I leave for Savannah, with Mike Skubic and Christopher Lee. Things are a bit chaotic around here!
Once again I missed blogging yesterday. I was at the “Work of Hearts” Gala, a fundraiser for Laser Eagles. I think for now it is just better to say that I will blog every four days at least, or twice a week. Until I get my road life back under my belt I don’t want to give the impression that I’m simply choosing not to blog. Rather I am re-establishing the “rhythm” that gets it all done. – (preferably making it all look easy at the same time!)
The Gala was fabulous and a real testament both to what people can accomplish even when they don’t necessarily see “eye-to-eye”, and to Kimberly Fu’s capacity as an event organizer. It was elegance at its best and done on shoe string. Regardless of how much money was made (I have no idea!) the essential value of Laser Eagles was communicated far and wide.
I had a real sense of people working together, as well. Mike Skubic and Helen Tweddle jumped in – with my Dad’s car – to make Greg’s transportation work out. Other tasks were getting handled with little fanfare. It made community seem real.
For me this was all on top of a week of last minute rushes, dramas, inadequate schedulings and opportunities – lost and found. It seemed that I still had only two double bookings to resolve, and they both worked out rather miraculously.
A sense of a fundamental shift is there. The new ODSP caseworker called me to get help in working out my complex financial situation with the clear intention of making it work for me. Olivia passed MY proposal around to all members of the Inclusion Circle. The media CAME to the Laser Eagles event. It feels like I’m actually being taken seriously!
I have wanted to and thought about blogging all the way through, but not had the energy and focus when the time came. I really SHOULD get one of those voice recorders that can be downloaded and converted to a text file.
Anyway the adventure has truly begun. The car is washed, gassed and loaded. Nearly everything is done, except the sleep.
Soon I will be painting, and revealing – mostly to myself – what message the rising Mimico Correctional Centre is trying to evoke.
I guess what really shifted is that I am willing, or nearly so, to be a leader with a distinct point of view, a defined vision of what the next world needs to be like, the beginnings of a strategy, and the willingness to have others improve it.
It is late and my eyes are drooping, my legs aching and my head fuzzy. Let the adventure begin.
Showing posts with label community. Show all posts
Showing posts with label community. Show all posts
Saturday, February 12, 2011
Wednesday, January 26, 2011
January 26, 2011
Today was mainly exhaustion, pain, little accomplishment, with the exception of a marvellous clearing call with Shirl this morning and a great walk and a coffee with cake at Yalla’s – with Michel, Helen his wife and Helen (my handler according to Dad). At Helen’s suggestion I Skyped Martha. I am glad I did. Tim hasn’t been well and although he will be fine Martha is clearly tired, and lonely. We laughed, and, if Savannah falls through, I will go to Wisconsin and do a course with her in April.
I figured out that one of the struggles I have with M (BMX Model of Inclusion) is that it has no memory. One of the things I was frustrated with ACF about yesterday was that one of the reasons put forth for not yet implementing the recommendations of its Inclusive Task Force was that certain – we used to call them intersectionalities – crossovers between marginalized people, like racialization and disability, had not yet been addressed. A critical story had been forgotten and we reminded the Board of it. However, this event put into perspective for me that empowering stories cannot be remembered in the M world.
This makes alliance, forgiveness, learning and stable empowerment impossible. It’s like giving a community mass Alzheimer’s.
I notice what big words I use – not my own language.
I also realize that I am approaching this potential choice point as if it were black and white, go or no go. Likely this attitude will screw it all up, and there is no real need for me to fear this so much. What I must do is determine what it is that I really need to make this work.
Martha – God love her – reminded me of many leaders I know. She also nudged me to ask for more money. I remember now that for my very first grant, in 1977, from the Atkinson Charitable Foundation, I asked for a salary that was about $500/month smaller than the next person who took the job.
On another topic, on Monday I found out that the prison that is being assembled from the cubes piled just outside of my bedroom window is being put up not at the Don Jail site, but here in South Etobicoke, in what used to be called Mimico. This morning the penny dropped. Those buildings that are under construction that I can also see from my bed and that will be featured in the painting that Mike and I are working on now – that incipient complex of two towers and a lower connecting building – that is the prison!
I have been watching it rise since practically its Day 1 and my Day 1 in Cycle 3.
So many people in the world are being separated from one another - housed, cloistered or imprisoned in individual compartments – condos, apartments, cells – and served – rehabilitated, recreationalized, managed, supervised. The life of a prisoner soon to be living five blocks from my bedroom is little different from that of the nearly mad old Caribbean woman who lives in poverty and fear, by herself, two apartments from me.
Since we are in fact surrounded by and infiltrated with M it must be the perfect place to fulfill my “mission”. There is no leaving to somewhere else. The definition of freedom is not getting out of here to be somewhere else.
These thoughts and realizations are both calming and terrifying. Now is the time to be still and listen.
I figured out that one of the struggles I have with M (BMX Model of Inclusion) is that it has no memory. One of the things I was frustrated with ACF about yesterday was that one of the reasons put forth for not yet implementing the recommendations of its Inclusive Task Force was that certain – we used to call them intersectionalities – crossovers between marginalized people, like racialization and disability, had not yet been addressed. A critical story had been forgotten and we reminded the Board of it. However, this event put into perspective for me that empowering stories cannot be remembered in the M world.
This makes alliance, forgiveness, learning and stable empowerment impossible. It’s like giving a community mass Alzheimer’s.
I notice what big words I use – not my own language.
I also realize that I am approaching this potential choice point as if it were black and white, go or no go. Likely this attitude will screw it all up, and there is no real need for me to fear this so much. What I must do is determine what it is that I really need to make this work.
Martha – God love her – reminded me of many leaders I know. She also nudged me to ask for more money. I remember now that for my very first grant, in 1977, from the Atkinson Charitable Foundation, I asked for a salary that was about $500/month smaller than the next person who took the job.
On another topic, on Monday I found out that the prison that is being assembled from the cubes piled just outside of my bedroom window is being put up not at the Don Jail site, but here in South Etobicoke, in what used to be called Mimico. This morning the penny dropped. Those buildings that are under construction that I can also see from my bed and that will be featured in the painting that Mike and I are working on now – that incipient complex of two towers and a lower connecting building – that is the prison!
I have been watching it rise since practically its Day 1 and my Day 1 in Cycle 3.
So many people in the world are being separated from one another - housed, cloistered or imprisoned in individual compartments – condos, apartments, cells – and served – rehabilitated, recreationalized, managed, supervised. The life of a prisoner soon to be living five blocks from my bedroom is little different from that of the nearly mad old Caribbean woman who lives in poverty and fear, by herself, two apartments from me.
Since we are in fact surrounded by and infiltrated with M it must be the perfect place to fulfill my “mission”. There is no leaving to somewhere else. The definition of freedom is not getting out of here to be somewhere else.
These thoughts and realizations are both calming and terrifying. Now is the time to be still and listen.
Tuesday, January 25, 2011
January 25, 2011
I apologize to readers. Last night I forgot to blog! Just plain forgot until I was already in bed.
In some ways, since I blogged about the prison cells collected outside my window, I have lived a rather drunk, rather surreal life. Not literally drunk – I have had no alcohol and very little Morphine. Rather I have thrown my hat thoroughly into Cycle 3 and now it is simply unfolding. With this come demands – on my time, listening, focus, energy, stamina, words. There are demands from my assistants, ACF, ODSP, the Marsha Forest Centre, the Wisdom City Team, from my circle, my body, Father, WPIT, e-mail, Laser Eagles, the ROM?, the Book of Judith. I am not complaining – just spinning!
It all stems from taking myself seriously – perhaps way too seriously. I continue to imagine that I can transform the world by transforming how diversity is valued and included. Mike and I saw “The King’s Speech” again tonight, and though I waiver between whether I am more like George or Lionel I know (as in KNOW) I have an essential part in a drama much bigger than myself. Everything speaks to me as a potential means of finding a pathway to peace through Inclusion so I can turn down very little these days. That, and the ongoing search for $$’s, keeps prodding me on.
This morning Mike and I met with ACF and their poverty reduction champions and this afternoon with old and new members of the ACF Board and the Inclusion Circle. In all we met for over six hours. Mike was still raring to go after it all, but I was exhausted. For me the morning was mainly about listening, and listening to mainly whining, grieving and nostalgia for days when organizing seemed clearer. Listening took place on top of my own weary concern with feeling like once again I am being drawn into strategies that don’t work,
In the afternoon I felt the need to speak up about how it seems that ACF has not implemented the Inclusion Task Force recommendations. That and other people’s stuff led to a much livelier energy. However, at the end of the day (literally), it still remains in the hands of others to decide when, who and for what end this process will continue.
Going into the movie I lined up behind a young woman who is familiar to me from the Wisdom Course. Coming out we ran into a woman and her friend/supporter, both of whom were active twenty-five years ago in some committee or other that I was part of, probably the Ontario Advocacy Coalition. I felt that a certain element of safety and familiarity was added back into my day. In particular the woman who has a long term cognitive difference after a brain haemorrhage that she had in 1970 brought back the joyful sense that life is to be celebrated. She is just the sort of person I want to bring to lunch with ACF – Mary Lou, Miriam, Chloe, Greg and Felicia – the people who show me over and over again that it is way more effective in the end to stop trying to fix everything, and to enjoy the food, the company and the movie.
Speaking of lunch, I had the best roast beef sandwich I think I have ever had in my life. I could chew and swallow every bite, and I ate the WHOLE thing.
In some ways, since I blogged about the prison cells collected outside my window, I have lived a rather drunk, rather surreal life. Not literally drunk – I have had no alcohol and very little Morphine. Rather I have thrown my hat thoroughly into Cycle 3 and now it is simply unfolding. With this come demands – on my time, listening, focus, energy, stamina, words. There are demands from my assistants, ACF, ODSP, the Marsha Forest Centre, the Wisdom City Team, from my circle, my body, Father, WPIT, e-mail, Laser Eagles, the ROM?, the Book of Judith. I am not complaining – just spinning!
It all stems from taking myself seriously – perhaps way too seriously. I continue to imagine that I can transform the world by transforming how diversity is valued and included. Mike and I saw “The King’s Speech” again tonight, and though I waiver between whether I am more like George or Lionel I know (as in KNOW) I have an essential part in a drama much bigger than myself. Everything speaks to me as a potential means of finding a pathway to peace through Inclusion so I can turn down very little these days. That, and the ongoing search for $$’s, keeps prodding me on.
This morning Mike and I met with ACF and their poverty reduction champions and this afternoon with old and new members of the ACF Board and the Inclusion Circle. In all we met for over six hours. Mike was still raring to go after it all, but I was exhausted. For me the morning was mainly about listening, and listening to mainly whining, grieving and nostalgia for days when organizing seemed clearer. Listening took place on top of my own weary concern with feeling like once again I am being drawn into strategies that don’t work,
In the afternoon I felt the need to speak up about how it seems that ACF has not implemented the Inclusion Task Force recommendations. That and other people’s stuff led to a much livelier energy. However, at the end of the day (literally), it still remains in the hands of others to decide when, who and for what end this process will continue.
Going into the movie I lined up behind a young woman who is familiar to me from the Wisdom Course. Coming out we ran into a woman and her friend/supporter, both of whom were active twenty-five years ago in some committee or other that I was part of, probably the Ontario Advocacy Coalition. I felt that a certain element of safety and familiarity was added back into my day. In particular the woman who has a long term cognitive difference after a brain haemorrhage that she had in 1970 brought back the joyful sense that life is to be celebrated. She is just the sort of person I want to bring to lunch with ACF – Mary Lou, Miriam, Chloe, Greg and Felicia – the people who show me over and over again that it is way more effective in the end to stop trying to fix everything, and to enjoy the food, the company and the movie.
Speaking of lunch, I had the best roast beef sandwich I think I have ever had in my life. I could chew and swallow every bite, and I ate the WHOLE thing.
Saturday, January 22, 2011
January 22, 2011
I am about to prepare the proposal that I will put before the ED of the Atkinson Charitable Foundation (ACF). I recognize that I have a highly emotional response to her request of me. Clearly I am reactivated (or stuck) at more than one level! So, I thought that I would use this blog – this expression vehicle – as a way of writing her a personal letter. Then I could write her the straightforward proposal. I can also suggest that, if she is interested, she read the blog, although that seems pretty risky at the moment. Of course it couldn’t seem so risky if I didn’t feel that much depends on how my working relationship with her turns out, and what each of us is able to accomplish by working together.
I am sure that this is just the sort of thing that Gloria wants me to face and transform in the context of. She is always saying I can’t give anything away, as in permitting others to run with the ball after I have set a direction. I don’t think this is true but I do recognize that I am not the best judge! So these are the words I would say to the new ED who is curious about me, maybe even hopeful about me, and who holds the key to what my next project will look like, perhaps.
Dearest O,
(It always seems that such letters start with “Dear” or “Dearest”)
I have been struggling with how to frame a project to put before you by Monday morning. Saturday evening is about to arrive and I only have the barest outline in my head. I am frustrated, angry and hopeful. I am trained enough to know that I’m not really responding to you, but to a series of former relationships and opportunities both lost and fulfilled which have shaped my life, my understanding of Inclusion and my current “mission” in life. It seems to me that you are interested and that you hold a key to potential progress. However, both my sense of what is a key and what progress is leave me with a feeling that you have undue power over me at this moment. I am reacting to my own “helpless identity” in the face of your “power”.
In the eyes of the world, you are black and I am crippled. We spoke euphemistically about these realities last Wednesday. I explained to you that my relationship to this point with Atkinson has been as a “window washer” – in other words, my circumstances have lead me to a certain kind of work in the world and consequently people imagine both that this is the kind of work I want to do and also that it is the only thing I’m good for. Accordingly, when people want to include me, support me and/or honour me, they offer me another window to wash. This is exactly what I FEEL like you are doing now.
I have been so tempted to ask you if you would like to make some pancakes.
Specifically, I stopped wanting to be an advocate in approximately 1991. I took it up again in order to support the Individualized Funding Coalition of Ontario. In 2004 we were offered an opportunity to “consult” with the Deputy Minister of the Ministry of Community and Social Services in Ontario. I participated fully! I did so because, even though I figured there was very little chance that the work would lead to real policy change, I felt that there needed to be as good as possible a document that recorded for history the benefits of individually supported community participation for people who are labelled with developmental disability.
It is nearly impossible, as you know I am sure, for people to build full participation with minimal resources, including some that are illegally established. Secondly, this power is further diminished by the intense bureaucratic overlay that comes with these resources. Add to this the intensely inadequate capacity to do good research when all that is available to do the work are volunteers, no control group, no standard definition of anything, and tight deadlines to come up with data and analysis. In spite of this, the IFCO managed to produce two reports that each had “eyeball” significance. In other words, you could see by just looking at the data that there are huge differences in how people who have individualized supports participate in their communities versus people who have agency support.
Shortly after we produced this data, the Finance Ministry of the Province of Ontario shut that Deputy Minister down, had him reassigned, and put in place an ineffective puppet. All evidence that the government might move towards individualized support for people who are labelled with developmental disability disappeared overnight.
The hidden consequence of all this, at least hidden to the Ministry, the bureaucrats and well meaning people such as yourself is that the people themselves who are labelled lose at every step of this process. First of all, they lose relationship with their parents and caregivers as these people exhaust themselves with extra work, and the process of being drawn into defining their loved one as a needy disabled person. Secondly, they lose the opportunities that disappear while their caregivers are busy doing other things rather than going out to the library, the park, a volunteer job somewhere, church, etc. etc. Finally, as the bureaucrats dash the hopes of the advocates and burn them out, they lose the energy and commitment of their parents and caregivers – the main source of support in their lives. How many people end up in a worse situation and in group homes just because their parents became advocates and then burnt out? I have no idea what the number is but I am sure that it is not small.
I was not, I believe, turned into a cynic by this defeat, not just because I was expecting defeat but because I knew that people could not be satisfied unless they had tried, and try we did. My intention was to support the effort as best as I could, not imagine that we were somehow going to buck the bureaucracy and actually make a change. At the same time I very much intended to never pick up the banner of advocacy again!
Lo and behold one should never say never! Here comes a very energetic, intelligent and passionate ED who is more than willing to make pancakes. Who am I to say that she is not correct? History has funny turns and I am not the one to say that this is not the time in history when a new voice and new energy might actually shift the social perception of people who have been labelled developmentally disabled.
You remind me so much of an energetic and passionate woman that I met in 1978 who turned my life, and many people’s lives, around. I hated her for a good six months before I fell in love with her and proceeded to do anything she asked of me because somehow around her things really worked out. For example, although we are far from having genuine Inclusive education in Ontario, the bureaucrats have never been able to kill it either, and that has a lot to do with Marsha Forest, who so inspired and so kicked butt that her influence continues 11 years after her death from breast cancer. I can only hope to have such power as Marsha had.
So, you say, it is time to gather the advocates and to have them start talking to each other and to have them begin to create a common identity and a common approach. Do you know that that is exactly what Marsha inspired in our city in 1980 to support our powerful engagement with the system during 1981, the International Year of the Disabled Person? The impact of that conference reverberates to this day in small but fundamental ways.
I can hear Marsha’s voice saying quit your bitching and get writing. This is an opportunity not to be missed.
Alright then – Let’s get on with it! Where’s that pancake recipe?
I am sure that this is just the sort of thing that Gloria wants me to face and transform in the context of. She is always saying I can’t give anything away, as in permitting others to run with the ball after I have set a direction. I don’t think this is true but I do recognize that I am not the best judge! So these are the words I would say to the new ED who is curious about me, maybe even hopeful about me, and who holds the key to what my next project will look like, perhaps.
Dearest O,
(It always seems that such letters start with “Dear” or “Dearest”)
I have been struggling with how to frame a project to put before you by Monday morning. Saturday evening is about to arrive and I only have the barest outline in my head. I am frustrated, angry and hopeful. I am trained enough to know that I’m not really responding to you, but to a series of former relationships and opportunities both lost and fulfilled which have shaped my life, my understanding of Inclusion and my current “mission” in life. It seems to me that you are interested and that you hold a key to potential progress. However, both my sense of what is a key and what progress is leave me with a feeling that you have undue power over me at this moment. I am reacting to my own “helpless identity” in the face of your “power”.
In the eyes of the world, you are black and I am crippled. We spoke euphemistically about these realities last Wednesday. I explained to you that my relationship to this point with Atkinson has been as a “window washer” – in other words, my circumstances have lead me to a certain kind of work in the world and consequently people imagine both that this is the kind of work I want to do and also that it is the only thing I’m good for. Accordingly, when people want to include me, support me and/or honour me, they offer me another window to wash. This is exactly what I FEEL like you are doing now.
I have been so tempted to ask you if you would like to make some pancakes.
Specifically, I stopped wanting to be an advocate in approximately 1991. I took it up again in order to support the Individualized Funding Coalition of Ontario. In 2004 we were offered an opportunity to “consult” with the Deputy Minister of the Ministry of Community and Social Services in Ontario. I participated fully! I did so because, even though I figured there was very little chance that the work would lead to real policy change, I felt that there needed to be as good as possible a document that recorded for history the benefits of individually supported community participation for people who are labelled with developmental disability.
It is nearly impossible, as you know I am sure, for people to build full participation with minimal resources, including some that are illegally established. Secondly, this power is further diminished by the intense bureaucratic overlay that comes with these resources. Add to this the intensely inadequate capacity to do good research when all that is available to do the work are volunteers, no control group, no standard definition of anything, and tight deadlines to come up with data and analysis. In spite of this, the IFCO managed to produce two reports that each had “eyeball” significance. In other words, you could see by just looking at the data that there are huge differences in how people who have individualized supports participate in their communities versus people who have agency support.
Shortly after we produced this data, the Finance Ministry of the Province of Ontario shut that Deputy Minister down, had him reassigned, and put in place an ineffective puppet. All evidence that the government might move towards individualized support for people who are labelled with developmental disability disappeared overnight.
The hidden consequence of all this, at least hidden to the Ministry, the bureaucrats and well meaning people such as yourself is that the people themselves who are labelled lose at every step of this process. First of all, they lose relationship with their parents and caregivers as these people exhaust themselves with extra work, and the process of being drawn into defining their loved one as a needy disabled person. Secondly, they lose the opportunities that disappear while their caregivers are busy doing other things rather than going out to the library, the park, a volunteer job somewhere, church, etc. etc. Finally, as the bureaucrats dash the hopes of the advocates and burn them out, they lose the energy and commitment of their parents and caregivers – the main source of support in their lives. How many people end up in a worse situation and in group homes just because their parents became advocates and then burnt out? I have no idea what the number is but I am sure that it is not small.
I was not, I believe, turned into a cynic by this defeat, not just because I was expecting defeat but because I knew that people could not be satisfied unless they had tried, and try we did. My intention was to support the effort as best as I could, not imagine that we were somehow going to buck the bureaucracy and actually make a change. At the same time I very much intended to never pick up the banner of advocacy again!
Lo and behold one should never say never! Here comes a very energetic, intelligent and passionate ED who is more than willing to make pancakes. Who am I to say that she is not correct? History has funny turns and I am not the one to say that this is not the time in history when a new voice and new energy might actually shift the social perception of people who have been labelled developmentally disabled.
You remind me so much of an energetic and passionate woman that I met in 1978 who turned my life, and many people’s lives, around. I hated her for a good six months before I fell in love with her and proceeded to do anything she asked of me because somehow around her things really worked out. For example, although we are far from having genuine Inclusive education in Ontario, the bureaucrats have never been able to kill it either, and that has a lot to do with Marsha Forest, who so inspired and so kicked butt that her influence continues 11 years after her death from breast cancer. I can only hope to have such power as Marsha had.
So, you say, it is time to gather the advocates and to have them start talking to each other and to have them begin to create a common identity and a common approach. Do you know that that is exactly what Marsha inspired in our city in 1980 to support our powerful engagement with the system during 1981, the International Year of the Disabled Person? The impact of that conference reverberates to this day in small but fundamental ways.
I can hear Marsha’s voice saying quit your bitching and get writing. This is an opportunity not to be missed.
Alright then – Let’s get on with it! Where’s that pancake recipe?
Wednesday, January 19, 2011
January 19, 2011
The awaited meeting with the ED of Atkinson Charitable Foundation happened this morning. I was able to organize that Mike Skubic was with me and, much to the ED’s amazement, he and his work on the inclusive video games was very exciting to her. It turns out that she has encountered the Zombie Walk movement, and the whole idea that zombies could be a vehicle for experiencing and teaching Inclusion was a welcome eye-popper. I was a little bit jealous. My whole stuff around the BMX Model of Inclusion is way more serious, significant and unfun!
Afterward, Mike and I had lunch and considered deeply her request. Fundamentally, she is offering both of us a partnership, and some space to invent what that partnership will look like. I am sure I don’t fully understand what she is offering or what her request is. By the end of the meeting I was struggling a bit to shift gears and so lost track of some of what she was saying. Basically, I have been working hard in a certain direction for the last few months and had not seriously considered Atkinson as a "playground". I am more than willing, even thrilled, to work with Atkinson. It's just unexpected!
I am hoping that because of this I can use the BMX Model to work with members of the Inclusion Circle, the Community Advocates that Atkinson funds, the ED herself, and any Atkinson Board members who wish to participate. I want them to describe their personal and organizational situations and issues and to describe strategies they might like to use to move forward.
After, say, six months we could collect the stories and thoughts and together look at where the model is and isn't useful. This will help to tighten up the model or debunk it if it is genuinely useless. Lastly, it might (FINALLY) create a way to connect with the work being done around the Canadian Index of Wellbeing - a result I have been trying to achieve for about three years!!!!
I am thankful to Mike for pushing me beyond my own cynicism. Atkinson has done very little with the Inclusion Circle, and neither did the Laidlaw Foundation before that. It seemed to me that advising these philanthropic organizations created the same kind of exclusion that advocacy does, i.e. it’s just another by-product of M. So my first reaction to her enthusiasm was to get confused and wonder what the heck I could do that would make any difference to what I am entrusted in. By the end of lunch a pathway was much clearer.
By the way, the work of the last week has required me (and us) to articulate the BMX Model more succinctly so here it is:
The BMX Model of Inclusion was created by Judith Snow, WPIT, www.judithsnow.org. It is designed to succinctly capture the multitude of circumstances that people call Inclusion. Its elements are “B” (for Basic), “M” (for Mechanical), and “X” (for Crossover).
At a most Basic level, a country or community allows a group to coexist, but no other changes are offered or made for the group. In the “M” or Mechanical state, the community is willing to make accommodations for the included group—examples might be ESL classes, job training, etc. In the third, Crossover state, both the community and the included recognize that their world benefits from the gifts and contributions of everyone. The perception fades that there are two sides and a distinct boundary. Any human difference can be looked at this way.
The model is useful for more than description. Communities and individuals can use it as a way of analyzing their situations and determining powerful strategies for finding better placement as participants and contributors in their society.
So, yet again, I have a new departure. Like Gloria, I worry that this is an utter waste of time. However, I think I must try this, because after all, supporting and rescuing people one person at a time is just another way of ensuring that basic change never happens.
I am not saying that I know how to make the basic transformation of society happen. I am saying that I am willing and able to keep looking for that way.
Afterward, Mike and I had lunch and considered deeply her request. Fundamentally, she is offering both of us a partnership, and some space to invent what that partnership will look like. I am sure I don’t fully understand what she is offering or what her request is. By the end of the meeting I was struggling a bit to shift gears and so lost track of some of what she was saying. Basically, I have been working hard in a certain direction for the last few months and had not seriously considered Atkinson as a "playground". I am more than willing, even thrilled, to work with Atkinson. It's just unexpected!
I am hoping that because of this I can use the BMX Model to work with members of the Inclusion Circle, the Community Advocates that Atkinson funds, the ED herself, and any Atkinson Board members who wish to participate. I want them to describe their personal and organizational situations and issues and to describe strategies they might like to use to move forward.
After, say, six months we could collect the stories and thoughts and together look at where the model is and isn't useful. This will help to tighten up the model or debunk it if it is genuinely useless. Lastly, it might (FINALLY) create a way to connect with the work being done around the Canadian Index of Wellbeing - a result I have been trying to achieve for about three years!!!!
I am thankful to Mike for pushing me beyond my own cynicism. Atkinson has done very little with the Inclusion Circle, and neither did the Laidlaw Foundation before that. It seemed to me that advising these philanthropic organizations created the same kind of exclusion that advocacy does, i.e. it’s just another by-product of M. So my first reaction to her enthusiasm was to get confused and wonder what the heck I could do that would make any difference to what I am entrusted in. By the end of lunch a pathway was much clearer.
By the way, the work of the last week has required me (and us) to articulate the BMX Model more succinctly so here it is:
The BMX Model of Inclusion was created by Judith Snow, WPIT, www.judithsnow.org. It is designed to succinctly capture the multitude of circumstances that people call Inclusion. Its elements are “B” (for Basic), “M” (for Mechanical), and “X” (for Crossover).
At a most Basic level, a country or community allows a group to coexist, but no other changes are offered or made for the group. In the “M” or Mechanical state, the community is willing to make accommodations for the included group—examples might be ESL classes, job training, etc. In the third, Crossover state, both the community and the included recognize that their world benefits from the gifts and contributions of everyone. The perception fades that there are two sides and a distinct boundary. Any human difference can be looked at this way.
The model is useful for more than description. Communities and individuals can use it as a way of analyzing their situations and determining powerful strategies for finding better placement as participants and contributors in their society.
So, yet again, I have a new departure. Like Gloria, I worry that this is an utter waste of time. However, I think I must try this, because after all, supporting and rescuing people one person at a time is just another way of ensuring that basic change never happens.
I am not saying that I know how to make the basic transformation of society happen. I am saying that I am willing and able to keep looking for that way.
Thursday, January 6, 2011
January 6, 2011
I need to draft some stuff for the Executive Director of the Atkinson Charitable Foundation so I thought I’d start here.
The task is to equip her with enough compelling analysis and evidence in two hours so that she can activate her Board to take action on their Inclusion agenda.
What can the Board actually do to empower Inclusion? Their focus is on policy change. Where would policy change actually make Inclusion more likely to occur?
What would Inclusion look like? According to the BMX model:
- B – easier, more expected, even facilitated access for “targeted” individuals and groups to claim a space with little or no interaction required
- M – person centred and individualized services, citizen and economic development focus replaces welfare, charitable and health approaches
- X – broad recognition that everyone has differences that can foster interaction, relationship and so social and economic opportunity AND that the very characteristics that get turned into symptoms and excuses for labelling are potential for interaction, relationship and so social and economic opportunity
What happened to developing a common literacy about Inclusion.
To make the leap one must understand “Giftedness” – that is that gifts are anything you have, are or do that creates an opportunity for interaction and that interaction is fundamental to relationship and so social and economic opportunity. All differences are gifts.
Anyone who believes that either they themselves or anyone else is not what they should be already is in a trap.
Tell some stories.
Explain my organization bases and my history. Explain that recreating the same sort of organizations as already exist will automatically exclude most people who are labelled.
Excluded people LOOK like they are not contributing. This is a structural limitation.
Hospitality is a powerful stimulation for Basic Inclusion. What happened to revolutionary lunches?
Economics and Inclusion? We already said uneven labour market practices were founded in social exclusion. There is an inseparable link. This is a POLICY issue.
How ACF spends its money, and currently, if ACF spends its money, is a mark of its true values. In terms of X Inclusion, withholding its resources totally indicates no willingness to enter into genuine dialogue with those whose citizenship remains unexpressed.
The task is to equip her with enough compelling analysis and evidence in two hours so that she can activate her Board to take action on their Inclusion agenda.
What can the Board actually do to empower Inclusion? Their focus is on policy change. Where would policy change actually make Inclusion more likely to occur?
What would Inclusion look like? According to the BMX model:
- B – easier, more expected, even facilitated access for “targeted” individuals and groups to claim a space with little or no interaction required
- M – person centred and individualized services, citizen and economic development focus replaces welfare, charitable and health approaches
- X – broad recognition that everyone has differences that can foster interaction, relationship and so social and economic opportunity AND that the very characteristics that get turned into symptoms and excuses for labelling are potential for interaction, relationship and so social and economic opportunity
What happened to developing a common literacy about Inclusion.
To make the leap one must understand “Giftedness” – that is that gifts are anything you have, are or do that creates an opportunity for interaction and that interaction is fundamental to relationship and so social and economic opportunity. All differences are gifts.
Anyone who believes that either they themselves or anyone else is not what they should be already is in a trap.
Tell some stories.
Explain my organization bases and my history. Explain that recreating the same sort of organizations as already exist will automatically exclude most people who are labelled.
Excluded people LOOK like they are not contributing. This is a structural limitation.
Hospitality is a powerful stimulation for Basic Inclusion. What happened to revolutionary lunches?
Economics and Inclusion? We already said uneven labour market practices were founded in social exclusion. There is an inseparable link. This is a POLICY issue.
How ACF spends its money, and currently, if ACF spends its money, is a mark of its true values. In terms of X Inclusion, withholding its resources totally indicates no willingness to enter into genuine dialogue with those whose citizenship remains unexpressed.
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?
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?
Tuesday, December 14, 2010
December 14, 2010
I don’t feel much like writing. It’s been a busy day – a Laser Eagles fund raising planning meeting, Laser Eagles itself where I painted five small pieces, a little shopping and finally a Book of Judith debrief. Interspersed were the usual things that add up to hours and hours of time allocated – getting up, bedpan trips, getting to, in, out and away from the car (especially in winter where cleaning the wheelchair wheels becomes part of the process), e-mail, (Farmville!), eating and preparing for the next – meal, day, meeting, project, assistant, etc. There are days and parts of days where one more interruption, thought, task, whatever seems much, much too much. Today has been like that!
On top of this is the nagging question in my head – “Am I actually doing anything?” Someone today asked me, “What’s new?”, and I had no answer except, “The ROM”, which she already knew about. Why is it that so much energy and activity is expended on so little? Even more, what compels me either to be always “doing” or asking “Why”.
Anyway it seems like a chore to write tonight, yet important to keep on going. It’s a commitment now, and keeping it helps me continue to have faith in myself.
Part of it is to keep on capturing the edges of this fabulous moment in my life when inclusion is emerging at an entirely new level. Here are recent examples:
- real progress with letting go and having something that I created and care about be picked up and nurtured by others – Kimberley with Laser Eagles, Mike with WPIT
- inching patiently through the structures and processes of the ROM so that they may genuinely be partners in creating something inclusive
- living in my home and neighbourhood like I actually want to and do belong here
- sneaking up on writing another book
- designing with colleagues a touring version of the Book of Judith that is authentically vulnerable and will draw host communities into the inclusive experience
- staying in a role on the Toronto Wisdom City Team for more than a few months, confronting what hasn’t worked and taking on reaching new successes.
Now a real question is, “Can I make all of this packaged in the sort of profile that I will get paid enough money so that my living AND enhanced participation costs are paid, and my personal assistants’ wages are covered ongoingly - deep into the future?”
Can my art and my writing make money?
Can my ideas, dreams and experience make money?
Why not? Somehow it seems more likely that they can and always could except where I have been putting unnecessary barriers in the way.
I have a friend whose advice I am seeking regularly about money who says it is simply a matter of saying what I am going to do to make money, then doing it. No more hype, getting ready, anxiety, whatever – just choose to do something, then do it!
I have had considerable practice with just that and creating these daily writings.
Now I will copy the pattern over to making money!
On top of this is the nagging question in my head – “Am I actually doing anything?” Someone today asked me, “What’s new?”, and I had no answer except, “The ROM”, which she already knew about. Why is it that so much energy and activity is expended on so little? Even more, what compels me either to be always “doing” or asking “Why”.
Anyway it seems like a chore to write tonight, yet important to keep on going. It’s a commitment now, and keeping it helps me continue to have faith in myself.
Part of it is to keep on capturing the edges of this fabulous moment in my life when inclusion is emerging at an entirely new level. Here are recent examples:
- real progress with letting go and having something that I created and care about be picked up and nurtured by others – Kimberley with Laser Eagles, Mike with WPIT
- inching patiently through the structures and processes of the ROM so that they may genuinely be partners in creating something inclusive
- living in my home and neighbourhood like I actually want to and do belong here
- sneaking up on writing another book
- designing with colleagues a touring version of the Book of Judith that is authentically vulnerable and will draw host communities into the inclusive experience
- staying in a role on the Toronto Wisdom City Team for more than a few months, confronting what hasn’t worked and taking on reaching new successes.
Now a real question is, “Can I make all of this packaged in the sort of profile that I will get paid enough money so that my living AND enhanced participation costs are paid, and my personal assistants’ wages are covered ongoingly - deep into the future?”
Can my art and my writing make money?
Can my ideas, dreams and experience make money?
Why not? Somehow it seems more likely that they can and always could except where I have been putting unnecessary barriers in the way.
I have a friend whose advice I am seeking regularly about money who says it is simply a matter of saying what I am going to do to make money, then doing it. No more hype, getting ready, anxiety, whatever – just choose to do something, then do it!
I have had considerable practice with just that and creating these daily writings.
Now I will copy the pattern over to making money!
Monday, December 13, 2010
December 13, 2010
Those who know me well will recall that my apartment is exceptional in that it is designed to wrap around a stairwell. This gives me two south facing windows from which I can see several parks and Lake Ontario. I also get a north facing window from which I can see two highways, abandoned industrial land, a dozen or more train tracks, parts of three housing coops, several streets and two buildings under construction.
Now you may well imagine that I and my various visitors spend as much time as possible looking at the gorgeous waterfront vista. Not! Almost to a person folks admire the south view for about thirty seconds, walk through to my bedroom, lean on my bed (it’s set to its highest position) and start pointing out the curious things they see – from joggers proceeding along the lonely stretch of road beside the abandoned fields to planes landing at the Lester B. Pearson Airport more than fifteen miles away to massive construction cranes in motion putting up high rise condos.
I am reminded again and again that humans love to watch. My north bedroom is replete with watchable entertainment, and – better than TV – it’s all real.
When I moved in 15 months ago I somewhat reluctantly chose the north facing bedroom because it is much closer to the bathroom and gives my assistants more privacy with the activities around my personal care. With some awkwardness we placed my bed right under the window so I could look out during those frequent hours when I am not sleeping. I knew the first night here that I had made one of the best decisions of my life in coming to the Robert Cooke Housing Coop and in taking the north bedroom.
Night or day there is always something going on. For three days this weekend there were seven GO trains, stationary side-by-side, positioned one car ahead of the next. GO trains are green and white, and the engine car has a flying wing design. The seven side by side but spread out so all were visible at once was quite a sight. I imagine it was done to take advertising photographs!
About three weeks ago I began to notice that the area between the train tracks and North Toronto Street had about half a dozen curious boxy structures, two windows each, seemingly dropped down helter skelter. Of course for a few days I wasn’t sure if they really were newly arrived, or if I simply hadn’t noticed them before. By the third or fourth day it was clear each morning that there were a few more than had been there the night before.
Then began to arrive different boxes, similar but with clear differences. About a dozen are slightly larger and a somewhat darker, more greyish hue. Another dozen have doors as well as two windows.
For a few nights last week something projected an intense light - bright enough to make me squint - and I had to cover part of my window and give up some of my view so I could sleep! The light would come on around 11:00pm and was gone by 6:00am. Now it’s gone. Also the forty or so boxes are neatly stacked in two layers and in straight rows instead of scattered about.
What are they building so close to the train tracks? Do they intend to lift each box over the road into the abandoned field? Will this be an industrial condo or rental prefab? Is this merely a way station, and someday soon I will awaken at 4:00am to dimly view a train made up of flatbed cars being loaded to take this nascent building away?
Of course I could do some research, probably quite easily, and get answers. I could have stepped back into the advocate role and complained to my City Councillor about the night light disturbance. But I didn’t and I don’t.
I am simply loving to watch.
Now you may well imagine that I and my various visitors spend as much time as possible looking at the gorgeous waterfront vista. Not! Almost to a person folks admire the south view for about thirty seconds, walk through to my bedroom, lean on my bed (it’s set to its highest position) and start pointing out the curious things they see – from joggers proceeding along the lonely stretch of road beside the abandoned fields to planes landing at the Lester B. Pearson Airport more than fifteen miles away to massive construction cranes in motion putting up high rise condos.
I am reminded again and again that humans love to watch. My north bedroom is replete with watchable entertainment, and – better than TV – it’s all real.
When I moved in 15 months ago I somewhat reluctantly chose the north facing bedroom because it is much closer to the bathroom and gives my assistants more privacy with the activities around my personal care. With some awkwardness we placed my bed right under the window so I could look out during those frequent hours when I am not sleeping. I knew the first night here that I had made one of the best decisions of my life in coming to the Robert Cooke Housing Coop and in taking the north bedroom.
Night or day there is always something going on. For three days this weekend there were seven GO trains, stationary side-by-side, positioned one car ahead of the next. GO trains are green and white, and the engine car has a flying wing design. The seven side by side but spread out so all were visible at once was quite a sight. I imagine it was done to take advertising photographs!
About three weeks ago I began to notice that the area between the train tracks and North Toronto Street had about half a dozen curious boxy structures, two windows each, seemingly dropped down helter skelter. Of course for a few days I wasn’t sure if they really were newly arrived, or if I simply hadn’t noticed them before. By the third or fourth day it was clear each morning that there were a few more than had been there the night before.
Then began to arrive different boxes, similar but with clear differences. About a dozen are slightly larger and a somewhat darker, more greyish hue. Another dozen have doors as well as two windows.
For a few nights last week something projected an intense light - bright enough to make me squint - and I had to cover part of my window and give up some of my view so I could sleep! The light would come on around 11:00pm and was gone by 6:00am. Now it’s gone. Also the forty or so boxes are neatly stacked in two layers and in straight rows instead of scattered about.
What are they building so close to the train tracks? Do they intend to lift each box over the road into the abandoned field? Will this be an industrial condo or rental prefab? Is this merely a way station, and someday soon I will awaken at 4:00am to dimly view a train made up of flatbed cars being loaded to take this nascent building away?
Of course I could do some research, probably quite easily, and get answers. I could have stepped back into the advocate role and complained to my City Councillor about the night light disturbance. But I didn’t and I don’t.
I am simply loving to watch.
Thursday, December 9, 2010
December 9, 2010
One more article! (I promise I will write anew tomorrow.)
The Story
by Judith A. Snow, MA
Prologue
Many groups of people who are marginalized today have a history of their people that gives an explanation of present day reality. For example, African-Americans
and African-Canadians have stories that tell how their ancestors were enslaved and brought to North America. Stories tell how some were guided by maps encoded into songs as they traveled the "underground railroad" and escaped to freedom.
These traditional stories give current members of the group, especially the children, an explanation for the poverty, discrimination, exploitation and hostility
they experience in the present. As the child grows, she or he may reject these interpretations and adopt or invent others. Even so, the stories have served a purpose. The stories give members of the group a way to defend themselves against the negative stereotypes that are attributed to them by others who have the power to discriminate and exploit.
Even while the material effects of marginalization are being experienced, the child has an inner anchor to sustain a positive identity for herself or himself. It
can be remembered that it is not her or his inevitable fate to be so abused. The opportunity remains to find a way to work for greater freedom and respect.
Children labeled with disability come to this world as members of every cultural group that occupies this world. Almost always they are born to parents who are
not themselves viewed as disabled. Those who surround them are almost always unfamiliar with the fact that handicappist stereotyping disguises and renders invisible the person's actual abilities and contributions. Their parents have no story to counter the negative beliefs about bodies and minds that function in unusual ways. In fact, their parents may very likely be champions of these stereotypes.
In such situations children have no way of knowing that there are other ways of knowing themselves. They cannot know how to resist adopting these beliefs about themselves. In other words, a labeled child has no choice but to understand themselves as broken, as being a "mistake" or a "defect", as being fundamentally incapable and irresponsible, as being a helpless misfit who is less than able.
For better or worse, human beings are easily molded by and adapt to the symbolic realities that we proclaim to each other. If I say the little white pill will take the pain away, sugar becomes a powerful analgesic. If enough of us believe you are dying, you are very likely to die. Consequently, the child who is labeled as "disabled" inevitably becomes a disabled child - broken, helpless and unable.
When I was seven months of age I was diagnosed as having Spinal Muscular Atrophy, a form of Muscular Dystrophy. I was labeled "severely physically disabled". When I was six years old I remember my father telling me that some U.S. doctors were putting children labeled "mentally retarded" to death, saying
that society should not have to bear the burden of caring for these children. Dad, who grew up in rural England, explained that in his youth children with "mental retardation" were able to grow potatoes along with everyone else. They were a regular, accepted part of his community. But children like me were killed. People felt they did not have enough resources to support someone who would likely not be able to grow food.
My father's story was harsh. But that is not what I heard when I was six. I heard that I had enemies and that I had better pay attention. I heard that he and Mom were going against the mainstream and that meant they loved me and that we were all vulnerable. I heard that the way to gain acceptance among strangers was to contribute to the well-being of the community.
Outside of this one occasion I was raised without an orientation to the prejudice daily inculcated into my being. I was in my thirties before it really began to occur to me that I was my own worst enemy. I had adopted all the ableist stereotypes as being realities of my true self. Consequently I cooperated while others,
wittingly or not, hurt my body, deflected my mind, impoverished my circumstances, and diminished my abilities and contributions.
I have long thought that living as a labeled person requires the skills to live as an alien in a misunderstanding, often hostile, foreign territory. It would be helpful to have an orientation to the ways of the foreign inhabitants. I often have wished to have a reorienting story, such as might have been told to me as I sat in my mother's lap, still a babe, if my mother had known I needed such a story. I invented such a story.
The Story
by Judith A. Snow, MA
You are not from here. You are more like the people who are from here than they can imagine. But they find it difficult to see you for who you are or to like you.
You have chosen to live your life among these people. This is a dangerous choice. You made this choice because you love these people. They need you.
You must remember that it takes a long time for most of these people to see that you are alive, and that you have a heart, and that you are trying to give something to them.
Some of them will never see you as anything more than a puppet at best. You must find people who will see that you are alive. You must help them over and over again to keep on seeing that you are alive. If you do not help people to see that you are alive, you will fall asleep. The only life you will have is the life of a
puppet filled with other people's stories. They may grow tired of playing with you; they may break you; they may throw you away; they may destroy you.
When you find people who can see you, you must learn to live among them. You must learn to believe most of what they believe, and to act in most of the same ways as they act. People who can see you will tell you how to do this. You must listen closely and watch carefully even when it is tiresome. If you do not strive to become like them, the others who cannot see you will drive you away. Even those who can see you will not be able to hold on to you.
However, you must not strive to be completely like these people or you will break yourself.
While you are among these people you must constantly search for ways to hang on to your true self and your true way of being even while you are acting like others as much as possible. As some of these people get to know you better and better they can help you find your true self and your own way of being.
Be courageous in asking these people to help you be your true self. Be courageous in doing this even when it hurts you and when it hurts them. It is your way to love these people. It is your way to heal them. It is your way to help them renew themselves. It is why you are choosing to live among them.
The Story
by Judith A. Snow, MA
Prologue
Many groups of people who are marginalized today have a history of their people that gives an explanation of present day reality. For example, African-Americans
and African-Canadians have stories that tell how their ancestors were enslaved and brought to North America. Stories tell how some were guided by maps encoded into songs as they traveled the "underground railroad" and escaped to freedom.
These traditional stories give current members of the group, especially the children, an explanation for the poverty, discrimination, exploitation and hostility
they experience in the present. As the child grows, she or he may reject these interpretations and adopt or invent others. Even so, the stories have served a purpose. The stories give members of the group a way to defend themselves against the negative stereotypes that are attributed to them by others who have the power to discriminate and exploit.
Even while the material effects of marginalization are being experienced, the child has an inner anchor to sustain a positive identity for herself or himself. It
can be remembered that it is not her or his inevitable fate to be so abused. The opportunity remains to find a way to work for greater freedom and respect.
Children labeled with disability come to this world as members of every cultural group that occupies this world. Almost always they are born to parents who are
not themselves viewed as disabled. Those who surround them are almost always unfamiliar with the fact that handicappist stereotyping disguises and renders invisible the person's actual abilities and contributions. Their parents have no story to counter the negative beliefs about bodies and minds that function in unusual ways. In fact, their parents may very likely be champions of these stereotypes.
In such situations children have no way of knowing that there are other ways of knowing themselves. They cannot know how to resist adopting these beliefs about themselves. In other words, a labeled child has no choice but to understand themselves as broken, as being a "mistake" or a "defect", as being fundamentally incapable and irresponsible, as being a helpless misfit who is less than able.
For better or worse, human beings are easily molded by and adapt to the symbolic realities that we proclaim to each other. If I say the little white pill will take the pain away, sugar becomes a powerful analgesic. If enough of us believe you are dying, you are very likely to die. Consequently, the child who is labeled as "disabled" inevitably becomes a disabled child - broken, helpless and unable.
When I was seven months of age I was diagnosed as having Spinal Muscular Atrophy, a form of Muscular Dystrophy. I was labeled "severely physically disabled". When I was six years old I remember my father telling me that some U.S. doctors were putting children labeled "mentally retarded" to death, saying
that society should not have to bear the burden of caring for these children. Dad, who grew up in rural England, explained that in his youth children with "mental retardation" were able to grow potatoes along with everyone else. They were a regular, accepted part of his community. But children like me were killed. People felt they did not have enough resources to support someone who would likely not be able to grow food.
My father's story was harsh. But that is not what I heard when I was six. I heard that I had enemies and that I had better pay attention. I heard that he and Mom were going against the mainstream and that meant they loved me and that we were all vulnerable. I heard that the way to gain acceptance among strangers was to contribute to the well-being of the community.
Outside of this one occasion I was raised without an orientation to the prejudice daily inculcated into my being. I was in my thirties before it really began to occur to me that I was my own worst enemy. I had adopted all the ableist stereotypes as being realities of my true self. Consequently I cooperated while others,
wittingly or not, hurt my body, deflected my mind, impoverished my circumstances, and diminished my abilities and contributions.
I have long thought that living as a labeled person requires the skills to live as an alien in a misunderstanding, often hostile, foreign territory. It would be helpful to have an orientation to the ways of the foreign inhabitants. I often have wished to have a reorienting story, such as might have been told to me as I sat in my mother's lap, still a babe, if my mother had known I needed such a story. I invented such a story.
The Story
by Judith A. Snow, MA
You are not from here. You are more like the people who are from here than they can imagine. But they find it difficult to see you for who you are or to like you.
You have chosen to live your life among these people. This is a dangerous choice. You made this choice because you love these people. They need you.
You must remember that it takes a long time for most of these people to see that you are alive, and that you have a heart, and that you are trying to give something to them.
Some of them will never see you as anything more than a puppet at best. You must find people who will see that you are alive. You must help them over and over again to keep on seeing that you are alive. If you do not help people to see that you are alive, you will fall asleep. The only life you will have is the life of a
puppet filled with other people's stories. They may grow tired of playing with you; they may break you; they may throw you away; they may destroy you.
When you find people who can see you, you must learn to live among them. You must learn to believe most of what they believe, and to act in most of the same ways as they act. People who can see you will tell you how to do this. You must listen closely and watch carefully even when it is tiresome. If you do not strive to become like them, the others who cannot see you will drive you away. Even those who can see you will not be able to hold on to you.
However, you must not strive to be completely like these people or you will break yourself.
While you are among these people you must constantly search for ways to hang on to your true self and your true way of being even while you are acting like others as much as possible. As some of these people get to know you better and better they can help you find your true self and your own way of being.
Be courageous in asking these people to help you be your true self. Be courageous in doing this even when it hurts you and when it hurts them. It is your way to love these people. It is your way to heal them. It is your way to help them renew themselves. It is why you are choosing to live among them.
Wednesday, December 8, 2010
December 8, 2010
I sent in my first draft to the ROM today. Although readers will know much of what I wrote I feel that the recipients ought to read it before I share it broadly. So tonight I will share something I wrote in November 2004 for l’Agora magazine.
Seeing Differently
Once I was crossing some streets in the town of Stratford, Ontario, returning to my van after some window shopping. I nearly ran over my friend who was crossing with me. His next question made me realize that he probably thought I either can’t see very well, or am a crazed driver. He asked why I crossed that street, and others, using a veering pathway, rather like tacking a sailboat upstream.
I explained that I do this so I can see cars coming. It is difficult for me to turn my head very much and I rely on my excellent peripheral vision to see around me. Wheelchairs don’t move sideways and, (in a motion that is very typical for “walkees”), they don’t move in one direction while twisting around to look in another. Consequently, to be sure that I am not about to be run down, I veer from side to side, in a zig-zag motion, when I am jay-walking!
I went on to explain that the world is almost always constructed as if everyone stood and walked. I have been on the second floor of a building with no elevator so few times in my life that I can’t imagine what a walk-up dentist’s office or an upstairs bedroom may look like. This might seem inconsequential to most readers, but it can have profound effects on the life of a person who uses a wheelchair.
In the mid-80’s, a young man named Justin Clarke sought permission in the Ontario courts to move out of a large institution where his parents placed him when he was a child. Friends had invited him to move with them into a cooperative housing development in Ottawa. His parents claimed that he was incompetent to make such a decision.
Mr. Clarke was thought to be unable to “benefit” from an education, so he was only offered the opportunity to learn to read and write when he was already a teenager. At that time it was discovered that he could use a spelling board very creatively.
Even more than I, Mr. Clarke knew very little about the second floors of our world. In fact he knew almost nothing about houses at all, having spent the majority of his life living in a large building that is a half a kilometer long.
The court wanted Mr. Clarke to explain how he intended to live and on describing the kind of house he thought he could live in. If you had lived Mr. Clarke’s life experience how would you have answered these questions?
Fortunately Justin Clarke had a judge who could understand that different people see different things. The judge set him free.
Sometimes it turns out that I have the advantage. In 1990 I made my first trip to the UK and some friends and I went to the great stone circle at Stonehenge. This sacred place has been roped off since 1975 and tourists can only see it from a distance. As I sat at the rope a security guard approached my friend and said: “Would the lady like to see it closer up?”
The lady (me!) said: “I certainly would!!!”
We wheeled right into the centre of the stones and I sat looking east through the space between two pillars. The security guard bent down to look and said: “The people who built this place were on average only 4 ft. 3 in. tall and you have to stoop to see why they designed the line of sight in this way.”
Sitting as I do in my wheelchair - as I was doing at that moment - I am 4 ft. 3 in. tall.
Seeing Differently
Once I was crossing some streets in the town of Stratford, Ontario, returning to my van after some window shopping. I nearly ran over my friend who was crossing with me. His next question made me realize that he probably thought I either can’t see very well, or am a crazed driver. He asked why I crossed that street, and others, using a veering pathway, rather like tacking a sailboat upstream.
I explained that I do this so I can see cars coming. It is difficult for me to turn my head very much and I rely on my excellent peripheral vision to see around me. Wheelchairs don’t move sideways and, (in a motion that is very typical for “walkees”), they don’t move in one direction while twisting around to look in another. Consequently, to be sure that I am not about to be run down, I veer from side to side, in a zig-zag motion, when I am jay-walking!
I went on to explain that the world is almost always constructed as if everyone stood and walked. I have been on the second floor of a building with no elevator so few times in my life that I can’t imagine what a walk-up dentist’s office or an upstairs bedroom may look like. This might seem inconsequential to most readers, but it can have profound effects on the life of a person who uses a wheelchair.
In the mid-80’s, a young man named Justin Clarke sought permission in the Ontario courts to move out of a large institution where his parents placed him when he was a child. Friends had invited him to move with them into a cooperative housing development in Ottawa. His parents claimed that he was incompetent to make such a decision.
Mr. Clarke was thought to be unable to “benefit” from an education, so he was only offered the opportunity to learn to read and write when he was already a teenager. At that time it was discovered that he could use a spelling board very creatively.
Even more than I, Mr. Clarke knew very little about the second floors of our world. In fact he knew almost nothing about houses at all, having spent the majority of his life living in a large building that is a half a kilometer long.
The court wanted Mr. Clarke to explain how he intended to live and on describing the kind of house he thought he could live in. If you had lived Mr. Clarke’s life experience how would you have answered these questions?
Fortunately Justin Clarke had a judge who could understand that different people see different things. The judge set him free.
Sometimes it turns out that I have the advantage. In 1990 I made my first trip to the UK and some friends and I went to the great stone circle at Stonehenge. This sacred place has been roped off since 1975 and tourists can only see it from a distance. As I sat at the rope a security guard approached my friend and said: “Would the lady like to see it closer up?”
The lady (me!) said: “I certainly would!!!”
We wheeled right into the centre of the stones and I sat looking east through the space between two pillars. The security guard bent down to look and said: “The people who built this place were on average only 4 ft. 3 in. tall and you have to stoop to see why they designed the line of sight in this way.”
Sitting as I do in my wheelchair - as I was doing at that moment - I am 4 ft. 3 in. tall.
Tuesday, December 7, 2010
December 7, 2010
I have been actively writing a brief for the ROM so tonight I will share something I wrote in March, 2001.
Thoughts on Self Determination
I was searching on the internet the other day and I found that the phrase “self determination” brought up a large number of articles on political sovereignty for colonized nations and for aboriginal groups. This got me to thinking again about the use these words when people talk about and plan with people who are labeled disabled.
Most groups in the world gained their distinctive identity because they have a definite geographical or ecological boundary, or because they share a culture. In my country, Canada, there are aboriginal groups who descend from people who lived as prairie hunters or woodland gatherers or tundra dwellers. Today they are fighting for their sovereignty -- their right to decide for themselves how to use their own resources, solve their own problems and conduct their own business, education and government. Also, the people who are descendants of settlers from France are also fighting for their self determination in Canada -- their sovereignty. They have remained a distinct group in the broader Canadian population because their language is still strong and vital, able to be used in everyday affairs of business and politics. French speaking people live mostly in the province of Quebec and so this group also has a geographic location and definition.
Are people who have been classified as disabled such a group? I don’t think so. Rather than being naturally a separate group, we are born, or acquire our “disability” identity, everywhere among people. We share every geography, ecology, language and culture with all human beings.
The term “self determination” is used in a different way when we are thinking of people who are labeled disabled. For us self determination is defined -- not as sovereignty -- but as Freedom, Authority, Support, and Responsibility. Advocates of self determination for people who are called disabled view these principles as the cornerstones that are required for a person to live a life of full participation in society.
Ever since I first heard the words “self determination” used in relationship to people who are considered disabled I have not liked this term. Don’t get me wrong. I work everyday to help make it possible for everyone to live in their own communities, choose their own homes and life styles, get good incomes, be respected, have friends and loved ones, and make the contributions they want to make through employment or in other ways that make sense to them.
It’s just that people who have great lives are not independent and not self determined -- no matter whether they are labeled able or disabled. All human life is made possible through relationship. Everything we know, everything we choose, everything we learn or do is in some way connected to other human beings. It is not more separateness that leads to vibrant lives of contribution, it is a better quality of relationship and cooperation. Independence does not lead to sovereignty in one’s own life -- the right sorts of relationship do!
The more powerful and fulfilled a person is the better is the quality of her or his relationships with other people. Powerful people influence and are influenced by thousands of other people. People listen to them and respect them -- they themselves also listen to and respect many other people. People who are fulfilled make choices based on knowledge and support garnered in a vast array of relationship -- personal and public, paid and unpaid, intimate and casual.
In other words a really good way to stay poor and isolated and unable to have a very good life is to keep trying to be independent!
“Disability” is really a lie. “Disability” is the idea that some people, because their bodies or minds or emotions function in ways that are unusual, are somehow unable to live fully as human beings. The truth is that every human being has some ordinary ways of being and some unusual ways. Everyone suffers sometimes and has burdens and sometimes burdens others. Everyone also has times of joy, sometimes gives something to someone else, and has the possibility of creating opportunity for others in the world. Paradoxically the most common thing about people is that everyone has unique ways of being themselves.
In our world the disability label is used as a way to set people apart from society. In other words “disability” is used as an excuse to deny us the sort of relationships and cooperation that would allow us to take our full place along side of other citizens in a diverse community.
There really is no lack of money or resources. And although there is always room for learning better ways to support people, we really do know basically how to include everyone together in one world. The question is: “Will we?”
The question: “Will we?” is not a question of personal independence and self determination. It is a question of relationship and politics. We are all citizens, regardless of ability. How are people who are called disabled going to take their full place in the world? We all need to take a part in answering this question.
A mistaken sense that self determination is the concern of one individual has often led to more of the same old thing. Those who don’t understand or want full participation everywhere can easily dress up segregation and oppression as choice. Too often, for example, a person is offered a “choice” between a group home, isolated living in an agency owned apartment or living as a paying guest in someone else’s family. Choosing between options that all are designed to keep you small is not real citizenship, whether or not it is self determination.
Advocates, family members and we who are labeled disabled must seek a deeper vision. We are human and society must reflect our human reality as much as it reflects the human reality of those who imagine their abilities are perfect and permanent. We must imagine a society where our unique and our ordinary contributions are opportunities for everyone and where we fundamentally belong. Such a society is the birthright of all people.
In the long run perhaps it doesn‘t really matter whether advocates continue to use the words “independent” and “self determination”. What matters, I believe, is that we continue to spread the vision that all abilities are needed in community to make the world complete and whole. Let us continue to work to make this vision real.
Thoughts on Self Determination
I was searching on the internet the other day and I found that the phrase “self determination” brought up a large number of articles on political sovereignty for colonized nations and for aboriginal groups. This got me to thinking again about the use these words when people talk about and plan with people who are labeled disabled.
Most groups in the world gained their distinctive identity because they have a definite geographical or ecological boundary, or because they share a culture. In my country, Canada, there are aboriginal groups who descend from people who lived as prairie hunters or woodland gatherers or tundra dwellers. Today they are fighting for their sovereignty -- their right to decide for themselves how to use their own resources, solve their own problems and conduct their own business, education and government. Also, the people who are descendants of settlers from France are also fighting for their self determination in Canada -- their sovereignty. They have remained a distinct group in the broader Canadian population because their language is still strong and vital, able to be used in everyday affairs of business and politics. French speaking people live mostly in the province of Quebec and so this group also has a geographic location and definition.
Are people who have been classified as disabled such a group? I don’t think so. Rather than being naturally a separate group, we are born, or acquire our “disability” identity, everywhere among people. We share every geography, ecology, language and culture with all human beings.
The term “self determination” is used in a different way when we are thinking of people who are labeled disabled. For us self determination is defined -- not as sovereignty -- but as Freedom, Authority, Support, and Responsibility. Advocates of self determination for people who are called disabled view these principles as the cornerstones that are required for a person to live a life of full participation in society.
Ever since I first heard the words “self determination” used in relationship to people who are considered disabled I have not liked this term. Don’t get me wrong. I work everyday to help make it possible for everyone to live in their own communities, choose their own homes and life styles, get good incomes, be respected, have friends and loved ones, and make the contributions they want to make through employment or in other ways that make sense to them.
It’s just that people who have great lives are not independent and not self determined -- no matter whether they are labeled able or disabled. All human life is made possible through relationship. Everything we know, everything we choose, everything we learn or do is in some way connected to other human beings. It is not more separateness that leads to vibrant lives of contribution, it is a better quality of relationship and cooperation. Independence does not lead to sovereignty in one’s own life -- the right sorts of relationship do!
The more powerful and fulfilled a person is the better is the quality of her or his relationships with other people. Powerful people influence and are influenced by thousands of other people. People listen to them and respect them -- they themselves also listen to and respect many other people. People who are fulfilled make choices based on knowledge and support garnered in a vast array of relationship -- personal and public, paid and unpaid, intimate and casual.
In other words a really good way to stay poor and isolated and unable to have a very good life is to keep trying to be independent!
“Disability” is really a lie. “Disability” is the idea that some people, because their bodies or minds or emotions function in ways that are unusual, are somehow unable to live fully as human beings. The truth is that every human being has some ordinary ways of being and some unusual ways. Everyone suffers sometimes and has burdens and sometimes burdens others. Everyone also has times of joy, sometimes gives something to someone else, and has the possibility of creating opportunity for others in the world. Paradoxically the most common thing about people is that everyone has unique ways of being themselves.
In our world the disability label is used as a way to set people apart from society. In other words “disability” is used as an excuse to deny us the sort of relationships and cooperation that would allow us to take our full place along side of other citizens in a diverse community.
There really is no lack of money or resources. And although there is always room for learning better ways to support people, we really do know basically how to include everyone together in one world. The question is: “Will we?”
The question: “Will we?” is not a question of personal independence and self determination. It is a question of relationship and politics. We are all citizens, regardless of ability. How are people who are called disabled going to take their full place in the world? We all need to take a part in answering this question.
A mistaken sense that self determination is the concern of one individual has often led to more of the same old thing. Those who don’t understand or want full participation everywhere can easily dress up segregation and oppression as choice. Too often, for example, a person is offered a “choice” between a group home, isolated living in an agency owned apartment or living as a paying guest in someone else’s family. Choosing between options that all are designed to keep you small is not real citizenship, whether or not it is self determination.
Advocates, family members and we who are labeled disabled must seek a deeper vision. We are human and society must reflect our human reality as much as it reflects the human reality of those who imagine their abilities are perfect and permanent. We must imagine a society where our unique and our ordinary contributions are opportunities for everyone and where we fundamentally belong. Such a society is the birthright of all people.
In the long run perhaps it doesn‘t really matter whether advocates continue to use the words “independent” and “self determination”. What matters, I believe, is that we continue to spread the vision that all abilities are needed in community to make the world complete and whole. Let us continue to work to make this vision real.
Monday, December 6, 2010
December 6, 2010
I have been actively writing a brief for the ROM so tonight I will share something I wrote on April 15, 2009.
Struggling Out of the Disability Box
Recently I viewed the documentary “Shameless” which is a celebration of Bonnie Sherr Klein’s return to filmmaking after being rendered unable to pursue her career for many years by two strokes. The video is shot in company with four others who are similarly accomplished artists who self identify as disabled. The following is the text of my comments to Catherine Frazee who is featured in the documentary and who is a professor at Ryerson University’s School of Disability Studies. I am hopeful that she will post a reply.
“I feel estranged from the growing crowd of advocates with disability who are actively giving definition to the disability culture. I watched the video with longing and sadness, of course recognizing myself sitting behind you in the scene where you spoke at the Latimer vigil that cold February morning. I was not chosen to be a part of creating Shameless. If I had been asked I likely would have said “No”. I am not part of the Ryerson gang. Though I am an artist, and paint regularly along side of others who are considered to be disabled, likely I will rarely choose or be asked to participate in disability arts events. I’m not complaining – I exclude myself.
The watershed is simply that I continue to believe in and to explore the possibility that I am not disabled, and that no one else is either. This mission of mine drives a wedge between me and my colleagues, such as yourself who is avidly creating disability pride and disability culture.
Last night and today some thoughts gelled, so I write to clarify and share them, and hopefully elicit a response.
In Shameless Bonnie Sherr said something like: “Once I was a person who made documentaries. Then I was a person with disabilities. Now I am a filmmaker with disabilities.”
What struck me is how in this statement “disability” is pretty much equivalent to “making documentaries”, in the sense of being a vocation or mission. It’s as if Bonnie is saying: “My first and chosen mission in life was to make documentaries, my second, forced/surprise mission was to be disabled, and now I can have both vocations.”
This is interesting to me because I am currently struggling to get myself out of what I see as a career box. Before I became involved in disability rights and inclusion I was training to be a psychological counselor and also interested in Mathematics. The sort of life choices that you are very familiar with presented themselves, and from 1976 until now every career choice has been related to disability. Not to go into details, I am now strongly suspecting that I was recently refused a job due to discrimination based on….. It’s subtle. Certainly the discrimination, if that is what it was, is not a blatant refusal to recognize my abilities. However, my career history cannot document the explicit credentials. Of course it can’t – getting the credentials was never open to me. I have equivalent experience, but it doesn’t look typical. But there in lies the discrimination. Why does it have to look typical?
So disability can indeed be a career. But it is not my ability and function, or absent ability or function, that is the basis of disability as a career. Nor is it Bonnie’s alteration in ability and function. Bonnie is a top notch creator of documentaries, before and since her brain injury, as well as a superlative wife and mother. These are her careers. What makes “disability” a career is our society’s insistence that this is who we are – disabled!
When I examine the word and the concept I see three things.
1) Disability as loss of function – the injured baseball player is placed on the disabled list. Such a person is expected to recover the same functions. When a person such as Bonnie recovers to different functions, or Catherine and Judith build a life without every having certain functions, are we thinking about and experiencing the same phenomenon. I don’t think so.
2) Disability as career. (see above)
3) Disability as opposite or counter to ability. Is a Black person a non-White? Is a woman a non-male? Is a lesbian not a woman? Of course these ideas have existed. Mostly they have been put in history’s waste basket. Why do we choose to explain ourselves in these terms as if ability were a linear phenomenon and our job is to keep on explaining that we didn’t really get the raw end of the stick?
I am struggling in three ways. First I am struggling to know who I am – myself. To the extent that I can own but not be driven by the above named misperceptions, to fight but not be defined by the constant erosion of the supports I use to participate in life, plus not be dominated by the spectre of poverty always lurking and all the other life degrading cultural phenomenon we all face, I am in constant search to know myself as real.
Secondly, I am struggling to make personal assistance visible. I was struck by the absence of personal assistants in Shameless, though this is not meant as a criticism since the presentation was complete in itself. However, neither Pat nor Michael is a typical partner, and there are others besides Pat in your own life who assist you in your creation of your life. I believe that for others to realize that we are not bad copies of the people we should have been, the contributions that we make to those who assist, and they to us, must be made visible and celebrated in the world. This work is also part of ending the hegemony of individualism.
Lastly, I struggle with the invisibility in the disability pride world of those who don’t speak and who are usually labeled as “profoundly developmentally delayed”. Since the early ‘80’s I have intentionally sought to know and understand the experiences and contributions of quiet people - people who live nearly exclusively through the bodies and voices of others. Their presence and contributions are evident, but generally ignored, misrepresented and discouraged. From the “independent living” movement until now not many have been willing to acknowledge that “they are us” too.
I deeply wish that we had another set of words and phrases to express the infinitely rich sphere of ways that human bodies show up on this planet, and the wonderfully rich, uncountable contributions this makes possible. Such words would make visible that human ability and the careers we pursue are related, but not the same, phenomenon. Such language would give us a strong foundation for not just accepting and tolerating, but fully celebrating, diversity. Such conversational capacity would put you and me on the same side of this fundamental liberation movement.
But for now I am simply stuck with saying and writing that I am not and never have been disabled.”
Struggling Out of the Disability Box
Recently I viewed the documentary “Shameless” which is a celebration of Bonnie Sherr Klein’s return to filmmaking after being rendered unable to pursue her career for many years by two strokes. The video is shot in company with four others who are similarly accomplished artists who self identify as disabled. The following is the text of my comments to Catherine Frazee who is featured in the documentary and who is a professor at Ryerson University’s School of Disability Studies. I am hopeful that she will post a reply.
“I feel estranged from the growing crowd of advocates with disability who are actively giving definition to the disability culture. I watched the video with longing and sadness, of course recognizing myself sitting behind you in the scene where you spoke at the Latimer vigil that cold February morning. I was not chosen to be a part of creating Shameless. If I had been asked I likely would have said “No”. I am not part of the Ryerson gang. Though I am an artist, and paint regularly along side of others who are considered to be disabled, likely I will rarely choose or be asked to participate in disability arts events. I’m not complaining – I exclude myself.
The watershed is simply that I continue to believe in and to explore the possibility that I am not disabled, and that no one else is either. This mission of mine drives a wedge between me and my colleagues, such as yourself who is avidly creating disability pride and disability culture.
Last night and today some thoughts gelled, so I write to clarify and share them, and hopefully elicit a response.
In Shameless Bonnie Sherr said something like: “Once I was a person who made documentaries. Then I was a person with disabilities. Now I am a filmmaker with disabilities.”
What struck me is how in this statement “disability” is pretty much equivalent to “making documentaries”, in the sense of being a vocation or mission. It’s as if Bonnie is saying: “My first and chosen mission in life was to make documentaries, my second, forced/surprise mission was to be disabled, and now I can have both vocations.”
This is interesting to me because I am currently struggling to get myself out of what I see as a career box. Before I became involved in disability rights and inclusion I was training to be a psychological counselor and also interested in Mathematics. The sort of life choices that you are very familiar with presented themselves, and from 1976 until now every career choice has been related to disability. Not to go into details, I am now strongly suspecting that I was recently refused a job due to discrimination based on….. It’s subtle. Certainly the discrimination, if that is what it was, is not a blatant refusal to recognize my abilities. However, my career history cannot document the explicit credentials. Of course it can’t – getting the credentials was never open to me. I have equivalent experience, but it doesn’t look typical. But there in lies the discrimination. Why does it have to look typical?
So disability can indeed be a career. But it is not my ability and function, or absent ability or function, that is the basis of disability as a career. Nor is it Bonnie’s alteration in ability and function. Bonnie is a top notch creator of documentaries, before and since her brain injury, as well as a superlative wife and mother. These are her careers. What makes “disability” a career is our society’s insistence that this is who we are – disabled!
When I examine the word and the concept I see three things.
1) Disability as loss of function – the injured baseball player is placed on the disabled list. Such a person is expected to recover the same functions. When a person such as Bonnie recovers to different functions, or Catherine and Judith build a life without every having certain functions, are we thinking about and experiencing the same phenomenon. I don’t think so.
2) Disability as career. (see above)
3) Disability as opposite or counter to ability. Is a Black person a non-White? Is a woman a non-male? Is a lesbian not a woman? Of course these ideas have existed. Mostly they have been put in history’s waste basket. Why do we choose to explain ourselves in these terms as if ability were a linear phenomenon and our job is to keep on explaining that we didn’t really get the raw end of the stick?
I am struggling in three ways. First I am struggling to know who I am – myself. To the extent that I can own but not be driven by the above named misperceptions, to fight but not be defined by the constant erosion of the supports I use to participate in life, plus not be dominated by the spectre of poverty always lurking and all the other life degrading cultural phenomenon we all face, I am in constant search to know myself as real.
Secondly, I am struggling to make personal assistance visible. I was struck by the absence of personal assistants in Shameless, though this is not meant as a criticism since the presentation was complete in itself. However, neither Pat nor Michael is a typical partner, and there are others besides Pat in your own life who assist you in your creation of your life. I believe that for others to realize that we are not bad copies of the people we should have been, the contributions that we make to those who assist, and they to us, must be made visible and celebrated in the world. This work is also part of ending the hegemony of individualism.
Lastly, I struggle with the invisibility in the disability pride world of those who don’t speak and who are usually labeled as “profoundly developmentally delayed”. Since the early ‘80’s I have intentionally sought to know and understand the experiences and contributions of quiet people - people who live nearly exclusively through the bodies and voices of others. Their presence and contributions are evident, but generally ignored, misrepresented and discouraged. From the “independent living” movement until now not many have been willing to acknowledge that “they are us” too.
I deeply wish that we had another set of words and phrases to express the infinitely rich sphere of ways that human bodies show up on this planet, and the wonderfully rich, uncountable contributions this makes possible. Such words would make visible that human ability and the careers we pursue are related, but not the same, phenomenon. Such language would give us a strong foundation for not just accepting and tolerating, but fully celebrating, diversity. Such conversational capacity would put you and me on the same side of this fundamental liberation movement.
But for now I am simply stuck with saying and writing that I am not and never have been disabled.”
Sunday, December 5, 2010
December 5, 2010
Tonight I will write some about how I am designing the exhibit - in my head.
To reiterate, I want people to be exposed to and potentially fall in love with the understanding that Inclusion is a multi-dimensional approach to building a vibrant society where social and economic benefits accrue from garnering the gifts of diversity.
The room lends itself neatly to the paradigm of structuring inclusive support that I used to call Harmonizing the Four Things Worth Doing – the paradigm that formed much of the basis of the 1991 book: “What’s Really Worth Doing and How to Do It”, still available through Inclusion Press. It looks like this:
Harmonizing the Four Things Worth Doing
The regular path that visitors who are merely going through the room with no intention of staying will be clearly marked as “The Normal Path – Do Not Stop or Look Around”. All along it will be enticements to step aside and stay awhile, learn something and stay awhile.
In addition, the room will be conceptually divided into three layers. The middle layer will be for language, including talking videos, text and more realistic paintings. The floor to about 3 ½ feet up will be for playful, interactive and colourful objects and paintings. Six feet up will be for projections, both colourful and those statements and photographs captured and recorded by visitors.
The groupings of videos, pictures and photographs on the central panel will focus on dreaming. The rest of the display space will focus on place, people and resources, indicating how different communities in my life have shaped my expressions of inclusion. Finally the “dead” space between the “Normal Road” and the fourth wall will be reserved for statements about barriers, such as hanging my first framed painting where my tracker was an art therapist who claimed that my work wasn’t art.
I will find ways to include other artists such as Felicia G. and Irena K. The intention is to show, first, that I am not unique among artists as a person who does not sit easily with being labelled disabled, and secondly, that I have influenced such artists.
Preliminary thoughts! More soon!
To reiterate, I want people to be exposed to and potentially fall in love with the understanding that Inclusion is a multi-dimensional approach to building a vibrant society where social and economic benefits accrue from garnering the gifts of diversity.
The room lends itself neatly to the paradigm of structuring inclusive support that I used to call Harmonizing the Four Things Worth Doing – the paradigm that formed much of the basis of the 1991 book: “What’s Really Worth Doing and How to Do It”, still available through Inclusion Press. It looks like this:
Harmonizing the Four Things Worth Doing
The regular path that visitors who are merely going through the room with no intention of staying will be clearly marked as “The Normal Path – Do Not Stop or Look Around”. All along it will be enticements to step aside and stay awhile, learn something and stay awhile.
In addition, the room will be conceptually divided into three layers. The middle layer will be for language, including talking videos, text and more realistic paintings. The floor to about 3 ½ feet up will be for playful, interactive and colourful objects and paintings. Six feet up will be for projections, both colourful and those statements and photographs captured and recorded by visitors.
The groupings of videos, pictures and photographs on the central panel will focus on dreaming. The rest of the display space will focus on place, people and resources, indicating how different communities in my life have shaped my expressions of inclusion. Finally the “dead” space between the “Normal Road” and the fourth wall will be reserved for statements about barriers, such as hanging my first framed painting where my tracker was an art therapist who claimed that my work wasn’t art.
I will find ways to include other artists such as Felicia G. and Irena K. The intention is to show, first, that I am not unique among artists as a person who does not sit easily with being labelled disabled, and secondly, that I have influenced such artists.
Preliminary thoughts! More soon!
Saturday, November 27, 2010
November 27, 2010
Once upon a time according to the calendar above my bed this was going to be a “do nothing” day. Ha, ha. I am busy dealing with contractual and fundraising issues that have already arisen days before my first official meeting with the ROM, and the shock to some of this sudden apparent change of plans.
I am not blaming anyone who thinks I am unreliable due to this sudden shift. I COULD have said “No” to the ROM. I could have said: “Sorry, I have been busy creating a very different spring, and I won’t have time for you.” I didn’t.
Anyway, enough of that. Nothing is “real” until contracts are signed and until then the emotional energy is best directed elsewhere, in my opinion.
So I went dancing.
There is an annual party put on by and for caregivers who are mostly women and mainly Philippino domestics who are intent on getting landed immigrant status in Canada while sending as much money home as possible to bring family members here. Another typical scenario is that they are saving to buy a home in the Philippines. I got to know several such people through a long term friendship with a man – Tim (now pronounced “Teem” since he married such a caregiver) who has a lifetime commitment to providing good support to vulnerable people.
I am aware that the situation surrounding “imported” caregivers is fraught with abuses and fundamentally is established to put these people at an economic disadvantage. However I have never met such a person who wasn’t enthusiastic about the arrangement. Those I have met seem to have been planning since early teenage to become either nurses or caregivers, to marry a man who will follow a similar path but in Saudia Arabia or Hong Kong, to meet up with him for six weeks every two years, and otherwise work six days a week and go to evangelistic church then party on the seventh. Five nights a week caregivers sleep at the “employer’s”, and on the other two nights they sleep two women to a bed in a two bedroom, eight person apartment.
It’s not an arrangement that many Canadians can fathom as a choice. Since running across this sub-culture I have marvelled.
One clear aspect of this lifestyle is that the women are very close to each other, hugging and kissing openly and frequently, dressing for each other – tonight they held a beauty pageant reminiscent of the “meat market” shows long out of favour in Canadian Caucasian culture – and paying much less attention to “eligible” men than I would expect in my familiar circles.
When they party they bring home cooked food and eat extravagantly, they sing and they dance – mostly with each other although men are not obviously excluded.
I love to dance when people are not coupling. When people are dancing in pairs moving a wheelchair on the dance floor can be an awkward and lonely effort. When it’s more free form, my presence seems to give people permission to strut their stuff in any way they can and to have a good time. People will try me out in ones or twos, doing their personal gyration for a short while, then move on. In the general moving on I get to go from person to person too, which is way easier to do in a wheelchair and more fun anyway to me.
Three times I have successfully done the couple thing on the dance floor, twice with a man. One guy and the woman are trained dancers, and all moulded their dance steps to the movements a wheelchair can actually do. I was able to keep up the dance in close “formation” for more than an hour – a feat of tremendous stamina and exhilaration for me and my partners.
I rarely get to dance. It’s something I love to do. Occasionally I remember and take steps to find an accessible place. Typically it’s too expensive or fixated on couple style dancing and I “forget” to pursue this pleasure.
But tonight I danced with Philippino women (and Teem). I had a great time. It is good to move my sore body again and to lose myself in the beat. It is a way to feel that I am “me”.
I am not blaming anyone who thinks I am unreliable due to this sudden shift. I COULD have said “No” to the ROM. I could have said: “Sorry, I have been busy creating a very different spring, and I won’t have time for you.” I didn’t.
Anyway, enough of that. Nothing is “real” until contracts are signed and until then the emotional energy is best directed elsewhere, in my opinion.
So I went dancing.
There is an annual party put on by and for caregivers who are mostly women and mainly Philippino domestics who are intent on getting landed immigrant status in Canada while sending as much money home as possible to bring family members here. Another typical scenario is that they are saving to buy a home in the Philippines. I got to know several such people through a long term friendship with a man – Tim (now pronounced “Teem” since he married such a caregiver) who has a lifetime commitment to providing good support to vulnerable people.
I am aware that the situation surrounding “imported” caregivers is fraught with abuses and fundamentally is established to put these people at an economic disadvantage. However I have never met such a person who wasn’t enthusiastic about the arrangement. Those I have met seem to have been planning since early teenage to become either nurses or caregivers, to marry a man who will follow a similar path but in Saudia Arabia or Hong Kong, to meet up with him for six weeks every two years, and otherwise work six days a week and go to evangelistic church then party on the seventh. Five nights a week caregivers sleep at the “employer’s”, and on the other two nights they sleep two women to a bed in a two bedroom, eight person apartment.
It’s not an arrangement that many Canadians can fathom as a choice. Since running across this sub-culture I have marvelled.
One clear aspect of this lifestyle is that the women are very close to each other, hugging and kissing openly and frequently, dressing for each other – tonight they held a beauty pageant reminiscent of the “meat market” shows long out of favour in Canadian Caucasian culture – and paying much less attention to “eligible” men than I would expect in my familiar circles.
When they party they bring home cooked food and eat extravagantly, they sing and they dance – mostly with each other although men are not obviously excluded.
I love to dance when people are not coupling. When people are dancing in pairs moving a wheelchair on the dance floor can be an awkward and lonely effort. When it’s more free form, my presence seems to give people permission to strut their stuff in any way they can and to have a good time. People will try me out in ones or twos, doing their personal gyration for a short while, then move on. In the general moving on I get to go from person to person too, which is way easier to do in a wheelchair and more fun anyway to me.
Three times I have successfully done the couple thing on the dance floor, twice with a man. One guy and the woman are trained dancers, and all moulded their dance steps to the movements a wheelchair can actually do. I was able to keep up the dance in close “formation” for more than an hour – a feat of tremendous stamina and exhilaration for me and my partners.
I rarely get to dance. It’s something I love to do. Occasionally I remember and take steps to find an accessible place. Typically it’s too expensive or fixated on couple style dancing and I “forget” to pursue this pleasure.
But tonight I danced with Philippino women (and Teem). I had a great time. It is good to move my sore body again and to lose myself in the beat. It is a way to feel that I am “me”.
Thursday, November 18, 2010
November 18, 2010
Another banner day – poo wise! And that’s enough said about that.
The pain is ridiculous today. Enough said about that too!
I had lunch today in my tiny studio that I set up by my south facing window. I call it “Beach”. I made a room by lining up two stand alone closets and putting storage bins on top to give a wall that permits light and air into the rest of the main space. Beach is where my personal assistants sleep and surf the internet. It is also where I occasionally paint and where guests sometimes stay.
I call this space Beach because the view faces Lake Ontario. One can see easily to the Niagara escarpment and occasionally one of those strange refractions occur that gives the illusion that Rochester, New York, is only a few kilometres away. Rochester is on the southern coast of the lake and certainly is two hundred kilometres or more due south of Toronto.
There are about four by six city blocks of neighbourhood between my eighth floor window and the lake. This neighbourhood includes six other high rise coops and condos, three parks with various amenities such as a basket ball court, swimming pool, toddlers’ play ground, walking and bike lanes and dog exercising facilities. There are two rows of small business establishments on either side of the main route, a street car track and two bus routes, two or three evangelistic style churches, two schools and multitudes of townhouses, duplexes and single houses. Even though we are a twenty minute drive from downtown Toronto or Canada’s biggest international airport (depending on which direction you take) I essentially live in a low key small town – a trick of geography.
My neighbourhood also includes flocks of Canada geese, swans, ducks, gulls, starlings, black and grey squirrels, beavers and at least one muskrat. There are oak, maple, chestnut, walnut, elm, willow and several varieties of evergreen trees in every yard and public area. Homeowners grow roses, coop residents plant marigolds and corn flowers, and an enormous variety of beautiful plants – names unknown to me – flourish in the parks.
At this time of year the deciduous trees have dropped their leaves, which turned from green to a riot of yellow through orange to red, then from pale to golden brown before being blown off their branches in the early winter wind storms of ten days ago.
As a watcher this is my favourite time of year to be looking out my Beach window. The dropping of leaves gives me a clear view of the lake, the neighbourhood between and the rocky shoreline, including the spit at the end of the park that is part of Humber College’s campus. When the weather is friendly I can stroll to the end of this spit (and along three or four other pathways) to be close to the water, birds, weeds, rocks and clouds.
I have travelled on cruise ships and to parts of eleven other countries as well as across Canada. There are many breathtakingly beautiful places in the world. South Etobicoke is one of them.
Today I was struck again by the strangely vertical and linear pattern that is visually embedded in my Beach view. There are mast heads on the sail boats in the marina south of Humber, myriads of lamp posts and hydro poles, hundreds of tall and naked trees, and blocks of tall, skinny townhouses with their steeply peaked roofs, built one against the other like European tenements. This afternoon even the clouds cooperated in the illusion of linearity. A lower bank of dark rain clouds scudded in a diagonal direction to a higher array of white fluffies creating patches of rain and sun light falling on the grey water in those straight piercing lines one sees sometimes on religious greeting cards.
Last winter I attempted to paint this strangely linear pattern of my neighbourhood. I worked on the canvas for months. The trackers who supported me teased me by telling stories to anyone who listened of how I tortured them with rulers and masking tape, trying to reproduce the pattern. I felt my result was inadequate. The painting hangs on my wall but it rarely draws comments from visitors.
This afternoon I felt the urge to try again. It is intimidating to think of both the trackers’ dismay and my inadequacies at replicating what my imagination so simply perceives. This aspect of my physical limitations – that my trackers must struggle on my behalf – leaves me with a wish that I could privately struggle on my own. Then I could have the space to learn what I don’t know now.
Perhaps it’s time to look at a MAC based drawing program again. Previously I couldn’t find anything that I could make work with my Morse Code interface. But who knows!
The pain is ridiculous today. Enough said about that too!
I had lunch today in my tiny studio that I set up by my south facing window. I call it “Beach”. I made a room by lining up two stand alone closets and putting storage bins on top to give a wall that permits light and air into the rest of the main space. Beach is where my personal assistants sleep and surf the internet. It is also where I occasionally paint and where guests sometimes stay.
I call this space Beach because the view faces Lake Ontario. One can see easily to the Niagara escarpment and occasionally one of those strange refractions occur that gives the illusion that Rochester, New York, is only a few kilometres away. Rochester is on the southern coast of the lake and certainly is two hundred kilometres or more due south of Toronto.
There are about four by six city blocks of neighbourhood between my eighth floor window and the lake. This neighbourhood includes six other high rise coops and condos, three parks with various amenities such as a basket ball court, swimming pool, toddlers’ play ground, walking and bike lanes and dog exercising facilities. There are two rows of small business establishments on either side of the main route, a street car track and two bus routes, two or three evangelistic style churches, two schools and multitudes of townhouses, duplexes and single houses. Even though we are a twenty minute drive from downtown Toronto or Canada’s biggest international airport (depending on which direction you take) I essentially live in a low key small town – a trick of geography.
My neighbourhood also includes flocks of Canada geese, swans, ducks, gulls, starlings, black and grey squirrels, beavers and at least one muskrat. There are oak, maple, chestnut, walnut, elm, willow and several varieties of evergreen trees in every yard and public area. Homeowners grow roses, coop residents plant marigolds and corn flowers, and an enormous variety of beautiful plants – names unknown to me – flourish in the parks.
At this time of year the deciduous trees have dropped their leaves, which turned from green to a riot of yellow through orange to red, then from pale to golden brown before being blown off their branches in the early winter wind storms of ten days ago.
As a watcher this is my favourite time of year to be looking out my Beach window. The dropping of leaves gives me a clear view of the lake, the neighbourhood between and the rocky shoreline, including the spit at the end of the park that is part of Humber College’s campus. When the weather is friendly I can stroll to the end of this spit (and along three or four other pathways) to be close to the water, birds, weeds, rocks and clouds.
I have travelled on cruise ships and to parts of eleven other countries as well as across Canada. There are many breathtakingly beautiful places in the world. South Etobicoke is one of them.
Today I was struck again by the strangely vertical and linear pattern that is visually embedded in my Beach view. There are mast heads on the sail boats in the marina south of Humber, myriads of lamp posts and hydro poles, hundreds of tall and naked trees, and blocks of tall, skinny townhouses with their steeply peaked roofs, built one against the other like European tenements. This afternoon even the clouds cooperated in the illusion of linearity. A lower bank of dark rain clouds scudded in a diagonal direction to a higher array of white fluffies creating patches of rain and sun light falling on the grey water in those straight piercing lines one sees sometimes on religious greeting cards.
Last winter I attempted to paint this strangely linear pattern of my neighbourhood. I worked on the canvas for months. The trackers who supported me teased me by telling stories to anyone who listened of how I tortured them with rulers and masking tape, trying to reproduce the pattern. I felt my result was inadequate. The painting hangs on my wall but it rarely draws comments from visitors.
This afternoon I felt the urge to try again. It is intimidating to think of both the trackers’ dismay and my inadequacies at replicating what my imagination so simply perceives. This aspect of my physical limitations – that my trackers must struggle on my behalf – leaves me with a wish that I could privately struggle on my own. Then I could have the space to learn what I don’t know now.
Perhaps it’s time to look at a MAC based drawing program again. Previously I couldn’t find anything that I could make work with my Morse Code interface. But who knows!
Tuesday, November 16, 2010
November 16, 2010
It was a good Laser Eagles day today. Of course, just about every Laser Eagles day is a good day. I enjoy being with the other artists. I enjoy working with a tracker – today my tracker was Mike Skubic. I enjoy the process of painting even when I don’t like the result that much. I don’t really like my last two paintings, but I’m not sure that I’m finished with either one of them anyways.
I thought I would start painting anger today. It ended up being a whole lot more yellow than I thought it would be, and a very bright yellow indeed. Paintings have a way of doing that – I mean turning out very differently than I thought they would be in the beginning. I have never really painted with yellow before, so maybe that is an angry colour for me. Just the same, it’s not what I thought anger would look like.
The other reason that it has been a good Laser Eagles day is that we had an organizational meeting and I was pleasantly surprised, perhaps even a little overwhelmed, at how it went. For one thing, I am learning to keep my mouth shut around Kimberly Fu who has an amazing capacity to say things quite differently than I would say them and yet end up with a similar or better result than I could have. In the last few weeks, the CAVE Board, particularly Paul and Bill, have gone from being kind of distracted and even a little resigned about the future of Laser Eagles to being very solid around the possibility of building and expanding. Paul in particular expressed a solid vision for having Laser Eagles be an organization that can sustain itself and be true to its mission. It was very easy to have him see that Kimberly should be the person who will stickhandle the next few months of shifting the organizational foundation.
I see where I have let some important aspects slip. In particular, it is much clearer now why it is important for the artists to sometimes use a way of showing to others that they are directing their trackers. Our familiarity with our trackers and, I believe, a certain laziness has caused us all to use methods of painting where it is easy to imagine that the tracker is choosing how the painting will go. Paul made it clear that others cannot actually see how the artists are making their paintings, and this is detrimental to the potential for fundraising.
Beyond that, the artists have never risen to the challenge of raising money or selling their art and giving the money to the program. I have sold a good number of paintings over the years, but have considered my volunteer efforts to be compensation for the supplies I use. Other artists have stacks of paintings sitting around in their bedrooms or have given some away as gifts. A few have sold paintings but kept all of the money. I don’t begrudge them the money but it is clear that they have not developed a sense of what it takes to sustain a consistent support system for themselves.
We have a real opportunity to show that we are capable of contributing to the organizational aspects of the world. I hope that we are able to actually grasp this opportunity at this time. It would be a big shift in the culture that we call inclusion.
Today I also had an insight into how I keep chaos happening in my financial life. At some point in the meeting I offered to do radio shows to promote Laser Eagles during the Christmas season. One of the CAVE Board members owns a radio station. Paul turned my offer down.
He pointed out that, without the organizational foundation in place, promoting Laser Eagles was detrimental to its long term stability. This is simply because anyone who might want to donate or get involved would not see accountability at this point but would see only our appearance of instability and – I guess what you would call “flying by the seat of our pants”.
How many times in my life have I gotten publicly enthusiastic about a possibility or a project and had nothing concrete to back up my enthusiasm! It is one thing for me to be a blue hat visionary. But visionaries cannot get very far on their own. And so, I have pushed away the very resources that my own life and my creations depend on.
Well, a new part of my history has begun. Cycle 3 has a genuine potential of being a time when I and others realize our wonderful ideas!
I thought I would start painting anger today. It ended up being a whole lot more yellow than I thought it would be, and a very bright yellow indeed. Paintings have a way of doing that – I mean turning out very differently than I thought they would be in the beginning. I have never really painted with yellow before, so maybe that is an angry colour for me. Just the same, it’s not what I thought anger would look like.
The other reason that it has been a good Laser Eagles day is that we had an organizational meeting and I was pleasantly surprised, perhaps even a little overwhelmed, at how it went. For one thing, I am learning to keep my mouth shut around Kimberly Fu who has an amazing capacity to say things quite differently than I would say them and yet end up with a similar or better result than I could have. In the last few weeks, the CAVE Board, particularly Paul and Bill, have gone from being kind of distracted and even a little resigned about the future of Laser Eagles to being very solid around the possibility of building and expanding. Paul in particular expressed a solid vision for having Laser Eagles be an organization that can sustain itself and be true to its mission. It was very easy to have him see that Kimberly should be the person who will stickhandle the next few months of shifting the organizational foundation.
I see where I have let some important aspects slip. In particular, it is much clearer now why it is important for the artists to sometimes use a way of showing to others that they are directing their trackers. Our familiarity with our trackers and, I believe, a certain laziness has caused us all to use methods of painting where it is easy to imagine that the tracker is choosing how the painting will go. Paul made it clear that others cannot actually see how the artists are making their paintings, and this is detrimental to the potential for fundraising.
Beyond that, the artists have never risen to the challenge of raising money or selling their art and giving the money to the program. I have sold a good number of paintings over the years, but have considered my volunteer efforts to be compensation for the supplies I use. Other artists have stacks of paintings sitting around in their bedrooms or have given some away as gifts. A few have sold paintings but kept all of the money. I don’t begrudge them the money but it is clear that they have not developed a sense of what it takes to sustain a consistent support system for themselves.
We have a real opportunity to show that we are capable of contributing to the organizational aspects of the world. I hope that we are able to actually grasp this opportunity at this time. It would be a big shift in the culture that we call inclusion.
Today I also had an insight into how I keep chaos happening in my financial life. At some point in the meeting I offered to do radio shows to promote Laser Eagles during the Christmas season. One of the CAVE Board members owns a radio station. Paul turned my offer down.
He pointed out that, without the organizational foundation in place, promoting Laser Eagles was detrimental to its long term stability. This is simply because anyone who might want to donate or get involved would not see accountability at this point but would see only our appearance of instability and – I guess what you would call “flying by the seat of our pants”.
How many times in my life have I gotten publicly enthusiastic about a possibility or a project and had nothing concrete to back up my enthusiasm! It is one thing for me to be a blue hat visionary. But visionaries cannot get very far on their own. And so, I have pushed away the very resources that my own life and my creations depend on.
Well, a new part of my history has begun. Cycle 3 has a genuine potential of being a time when I and others realize our wonderful ideas!
Friday, November 12, 2010
November 12, 2010
Today the pain clinic took place. It was a distinctly deflating experience.
I imagined white coated medical technicians, and of course, the mandatory doctor, giving me sermon-like discourses about the importance of learning to live with pain and not trying to get rid of it. I expected to be introduced to the mysteries of “managing” without medication. I was braced to be told about classes, approaches, required behaviour changes and, through some kind of ritual, to be initiated into membership with those who “live with pain”!
There was only one other person waiting when I arrived (on time) and when I left less than an hour later, still only one other. The receptionist was the only one wearing a white coat. I met two doctors – the resident in training and, after him, a lovely woman originally from London, England.
The eight page questionnaire that I turned in to the receptionist – filled out – never appeared again. The young man took an incomplete history and referred largely to the computer record of my recent hospital stay and previous clinical visits going back ten years.
The doctor in charge did not balk at my statements that most medications make me sick, or that I find them hard to swallow. However I was also told that although I will be given return appointments to try acupuncture and a TENS machine, nothing “alternative” will be covered by OHIP (Ontario’s health insurance) or ODSP (Ontario’s benefit for those labelled disabled). All she was really willing to offer is – another pill.
I left with the prescription, filled it at the hospital pharmacy and then my personal assistant either left the bag at the cash register or dropped it. I arrived at home with no medication and no recollection of its name. I only know that its other use is as an anti-depressant and that I have been given a paediatric dosage. It is to be taken before bed as it will make me sleepy. So it goes! My pain makes me like a sad and restless baby.
For this I waited more than ten months!
There is a song from the ‘50’s – Peggy Lee? – that goes: “If that’s all there is, if that’s all there is, if that’s all there is my friend then let’s keep dancing, let’s break out the booze and have a ball, if that’s all there is.” I don’t really know why this should be such a let down for me, but somehow when I compare what the best official medicine in Toronto has to offer with all my masseuse Jen and my friends have been coming up with for the past six weeks to support me in this crucial life shift, I’m a little stunned.
This morning my friend, Gloria, was recommending a pain relieving ointment made from the combined oils of Emu and marijuana. I have no idea where to get either, but clearly I have friends who do. It sure has got to beat drugging myself into insensitivity.
In any case in my reality the pain clinic of Nov. 12 was the watershed after which I would have all the information and experience necessary to make some concrete choices and plans about my Cycle 3 life. The clinic has come and gone. Disappointing as the outcome is my life awaits my direction.
I imagined white coated medical technicians, and of course, the mandatory doctor, giving me sermon-like discourses about the importance of learning to live with pain and not trying to get rid of it. I expected to be introduced to the mysteries of “managing” without medication. I was braced to be told about classes, approaches, required behaviour changes and, through some kind of ritual, to be initiated into membership with those who “live with pain”!
There was only one other person waiting when I arrived (on time) and when I left less than an hour later, still only one other. The receptionist was the only one wearing a white coat. I met two doctors – the resident in training and, after him, a lovely woman originally from London, England.
The eight page questionnaire that I turned in to the receptionist – filled out – never appeared again. The young man took an incomplete history and referred largely to the computer record of my recent hospital stay and previous clinical visits going back ten years.
The doctor in charge did not balk at my statements that most medications make me sick, or that I find them hard to swallow. However I was also told that although I will be given return appointments to try acupuncture and a TENS machine, nothing “alternative” will be covered by OHIP (Ontario’s health insurance) or ODSP (Ontario’s benefit for those labelled disabled). All she was really willing to offer is – another pill.
I left with the prescription, filled it at the hospital pharmacy and then my personal assistant either left the bag at the cash register or dropped it. I arrived at home with no medication and no recollection of its name. I only know that its other use is as an anti-depressant and that I have been given a paediatric dosage. It is to be taken before bed as it will make me sleepy. So it goes! My pain makes me like a sad and restless baby.
For this I waited more than ten months!
There is a song from the ‘50’s – Peggy Lee? – that goes: “If that’s all there is, if that’s all there is, if that’s all there is my friend then let’s keep dancing, let’s break out the booze and have a ball, if that’s all there is.” I don’t really know why this should be such a let down for me, but somehow when I compare what the best official medicine in Toronto has to offer with all my masseuse Jen and my friends have been coming up with for the past six weeks to support me in this crucial life shift, I’m a little stunned.
This morning my friend, Gloria, was recommending a pain relieving ointment made from the combined oils of Emu and marijuana. I have no idea where to get either, but clearly I have friends who do. It sure has got to beat drugging myself into insensitivity.
In any case in my reality the pain clinic of Nov. 12 was the watershed after which I would have all the information and experience necessary to make some concrete choices and plans about my Cycle 3 life. The clinic has come and gone. Disappointing as the outcome is my life awaits my direction.
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