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?
Showing posts with label family. Show all posts
Showing posts with label family. Show all posts
Saturday, January 22, 2011
Tuesday, December 28, 2010
December 28, 2010
Mike has pretty much finished reading through the autobiography section of the 475 pages we assembled last week. Kimberly is reading too, and getting quite into it, as in she is upset about some of it! Interesting! Their reactions reconnect me with my story.
As editor Mike has suggested that I write about the end of Cycle 2 as a bridge into the central location of the book – Cycle 3. Makes sense, and at the same time, it’s a bit intimidating. It might take more than two pages. It might take time and effort.
But it’s TIME – time for this book.
So here goes, Mike!
I became conscious that another cycle had ended or was coming to an end at about the time of my 60th birthday. I am not clear. Recently I have been noticing that my memory for events from the time of returning from the 2008/09 tour – late April 2009 through my hospitalization in Oct. 2010 – is jumbled. I chalk it up to stress, the growing infection in my body and the actual effect of one Cycle passing into another.
The foundation of the concept of my life being in 30 year cycles comes from the belief – powerfully communicated to me when I was six or so - that I certainly could not live past thirty years of age. At about that time I was enrolled in a research study conducted at “Sick Kids” – the Hospital for Sick Kids in Toronto. From that point I was to take two trips every six months into a big city, by car, at a time when such a voyage was strenuous for every person involved – me, my mother and my father.
There are several elements of this pattern that created fundamental perceptions of life for me. The adult Judith has always struggled with the “obvious” conclusions that the child came to in these four trips every year.
First of all, I knew I must be sick. Why so much attention from doctors and big hospital people if I wasn’t sick! Secondly nearly every encounter was bookmarked by intense pain and loneliness, and at the same time a sense of specialness and intimacy. For example, on each of these mornings my father would get me up – something which otherwise my mother always did. He always gave me the special breakfast – boiled egg mashed up on buttered, nearly burnt toast – a breakfast that I looked forward to passionately. Once the appointments were completed my mother always took me for an extra special lunch. She never said anything but it was understood that it was her way of saying that she knew how much these trips were a source of pain and loneliness for me. Finally, the doctors always paid a certain amount of special attention to me and expected me to perform in some entertaining way. For example, they always asked me to tell them a joke on each occasion. I realized at a very early age that this attention set me apart in some way, and so as much as the actual occasions were difficult, I also at some level looked forward to these benchmarks in my otherwise boring life.
And so, the fundamental themes of my life were well established before I was eight. I was special, I was different, I was dying, I was to be treated painfully by every adult who mattered to me, and I had nothing to say about any of it, except to be ready to tell jokes and eat lots of good food. I was very chubby until my 50’s.
(To be continued…)
As editor Mike has suggested that I write about the end of Cycle 2 as a bridge into the central location of the book – Cycle 3. Makes sense, and at the same time, it’s a bit intimidating. It might take more than two pages. It might take time and effort.
But it’s TIME – time for this book.
So here goes, Mike!
I became conscious that another cycle had ended or was coming to an end at about the time of my 60th birthday. I am not clear. Recently I have been noticing that my memory for events from the time of returning from the 2008/09 tour – late April 2009 through my hospitalization in Oct. 2010 – is jumbled. I chalk it up to stress, the growing infection in my body and the actual effect of one Cycle passing into another.
The foundation of the concept of my life being in 30 year cycles comes from the belief – powerfully communicated to me when I was six or so - that I certainly could not live past thirty years of age. At about that time I was enrolled in a research study conducted at “Sick Kids” – the Hospital for Sick Kids in Toronto. From that point I was to take two trips every six months into a big city, by car, at a time when such a voyage was strenuous for every person involved – me, my mother and my father.
There are several elements of this pattern that created fundamental perceptions of life for me. The adult Judith has always struggled with the “obvious” conclusions that the child came to in these four trips every year.
First of all, I knew I must be sick. Why so much attention from doctors and big hospital people if I wasn’t sick! Secondly nearly every encounter was bookmarked by intense pain and loneliness, and at the same time a sense of specialness and intimacy. For example, on each of these mornings my father would get me up – something which otherwise my mother always did. He always gave me the special breakfast – boiled egg mashed up on buttered, nearly burnt toast – a breakfast that I looked forward to passionately. Once the appointments were completed my mother always took me for an extra special lunch. She never said anything but it was understood that it was her way of saying that she knew how much these trips were a source of pain and loneliness for me. Finally, the doctors always paid a certain amount of special attention to me and expected me to perform in some entertaining way. For example, they always asked me to tell them a joke on each occasion. I realized at a very early age that this attention set me apart in some way, and so as much as the actual occasions were difficult, I also at some level looked forward to these benchmarks in my otherwise boring life.
And so, the fundamental themes of my life were well established before I was eight. I was special, I was different, I was dying, I was to be treated painfully by every adult who mattered to me, and I had nothing to say about any of it, except to be ready to tell jokes and eat lots of good food. I was very chubby until my 50’s.
(To be continued…)
Saturday, December 25, 2010
December 25, 2010 - Signing On Again
Well, I’m signing on again. It took two days to assemble 475 pages of stuff I have been writing since 1992 or so. Andrew K. printed off the pile; Mike Skubic is doing a quick read through to make a rough division between autobiographic material and theory. Then my real work starts – to pull it together and to write the necessary bridges to get two books ready for a serious edit.
Anyway, even with reinstating Farmville – under an alter ego, Alex Rooke - I have time and I missed writing, so I’m back!
Obviously, today is Christmas Day. Lots of eating! Lots of driving! Lots of Christmas songs and one Chanukah tune on the radio that either I have never heard before or were in “covers” I am unfamiliar with. Lots of stuff I don’t like but mixed in with all a string of moments and events that are whimsical, nostalgic, magical or just plain funny. It adds up to another memorable Christmas.
The good stuff:
- My brother Jim pulled off on short notice a truly family Christmas brunch, with Dad, Rosemary and Armand present, and Ian and Maude (still a little hung over from Ian’s 65th birthday celebration two nights ago!) Skyping in from Yuma, Arizona.
- A kiss and a beautiful red candle from Cristos.
- Being at Camphill Nottawasaga for Christmas dinner – a true feast.
- The setting sunlight on the forest trees.
- Getting the coffee stains out of my bra and shirt AND having a second red shirt to change into between feasts!
- Getting a new recipe for cranberry sauce.
- Having ten people LOVE the apple pie I brought.
I began to think that maybe next year I could pull off a Christmas that I would fully feel was “right” for me. Of course, as soon as the thought crossed my mind I began to back away from it. The mere effort to “make” something “right” can cause me so much stress that it can never be right. Just the same, besides the plain reality that Mom is no longer with us to set the pace and declare what the standards are, there are other missing factors that perhaps I could take on having in place.
I realize that I have not put my oar into the water Christmas-wise for some time. Last year I was too freaked out from Camphill having ejected me and the unanticipated return to Toronto. The year before that I was in Tybee. For four or five years before that I put all my energies into being on the Landmark Education Wisdom Year End Cruise. I am definitely out of the habit of designing my own piece of this December celebration.
Yet, it clearly is important to me. The day is no longer a religious essential within my spiritual framework, but it holds a sense of mystery just the same – the songs that say we can end war if we want to, the concept of the most vulnerable turning the world on its ear, the call to generousity, hospitality and abundance speak to me deeply.
So what would I put into my Christmas.
- a real tree, one that gives its life, and has scent and requires tending and cleaning up afterward
- a gathering to decorate the tree, and elegant ornaments to do it with
- an accessible celebration and feast on Christmas Day, where I am with parts of my family that never think of inviting me, and where I don’t worry all day about where and when I will get to the bathroom
- a personal assistant for the day that I want to spend the day with
- a feast that is generous, sumptuous and diabetic friendly
- some old fashioned, well performed, Christmas music
- some fun stuff like a Secret Santa present exchange
- a guest or two who would welcome an opportunity for a “real” Christmas
I guess I better get cracking making my Christmas 2011 happen!
Anyway, even with reinstating Farmville – under an alter ego, Alex Rooke - I have time and I missed writing, so I’m back!
Obviously, today is Christmas Day. Lots of eating! Lots of driving! Lots of Christmas songs and one Chanukah tune on the radio that either I have never heard before or were in “covers” I am unfamiliar with. Lots of stuff I don’t like but mixed in with all a string of moments and events that are whimsical, nostalgic, magical or just plain funny. It adds up to another memorable Christmas.
The good stuff:
- My brother Jim pulled off on short notice a truly family Christmas brunch, with Dad, Rosemary and Armand present, and Ian and Maude (still a little hung over from Ian’s 65th birthday celebration two nights ago!) Skyping in from Yuma, Arizona.
- A kiss and a beautiful red candle from Cristos.
- Being at Camphill Nottawasaga for Christmas dinner – a true feast.
- The setting sunlight on the forest trees.
- Getting the coffee stains out of my bra and shirt AND having a second red shirt to change into between feasts!
- Getting a new recipe for cranberry sauce.
- Having ten people LOVE the apple pie I brought.
I began to think that maybe next year I could pull off a Christmas that I would fully feel was “right” for me. Of course, as soon as the thought crossed my mind I began to back away from it. The mere effort to “make” something “right” can cause me so much stress that it can never be right. Just the same, besides the plain reality that Mom is no longer with us to set the pace and declare what the standards are, there are other missing factors that perhaps I could take on having in place.
I realize that I have not put my oar into the water Christmas-wise for some time. Last year I was too freaked out from Camphill having ejected me and the unanticipated return to Toronto. The year before that I was in Tybee. For four or five years before that I put all my energies into being on the Landmark Education Wisdom Year End Cruise. I am definitely out of the habit of designing my own piece of this December celebration.
Yet, it clearly is important to me. The day is no longer a religious essential within my spiritual framework, but it holds a sense of mystery just the same – the songs that say we can end war if we want to, the concept of the most vulnerable turning the world on its ear, the call to generousity, hospitality and abundance speak to me deeply.
So what would I put into my Christmas.
- a real tree, one that gives its life, and has scent and requires tending and cleaning up afterward
- a gathering to decorate the tree, and elegant ornaments to do it with
- an accessible celebration and feast on Christmas Day, where I am with parts of my family that never think of inviting me, and where I don’t worry all day about where and when I will get to the bathroom
- a personal assistant for the day that I want to spend the day with
- a feast that is generous, sumptuous and diabetic friendly
- some old fashioned, well performed, Christmas music
- some fun stuff like a Secret Santa present exchange
- a guest or two who would welcome an opportunity for a “real” Christmas
I guess I better get cracking making my Christmas 2011 happen!
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